~*~ January 20th, 2008
REAL facts about Bartholin Cysts
I got my first bartholin cyst when I was 12 (!!!). I was definately not sexually active. I have had them recurring ever since, at first it was only one cyst every year or so - sometimes more. I am now 25. I have been with one man, my husband, and he with one woman, me. I definately do NOT have STDs. I do NOT wear tight pants. I DO have GREAT hygeine.
When I was 20 and had recently give birth to my first child, another cyst showed up. By then I was averaging about 2-4 every month. Usually they didn't go away for months at a time. The pain is unbearable, it was worse than pre-labor pains for me.
I went to the family medical center. We are army, so we were seen immediately as soon as I put in the appointment. By then my one cyst had been around for about 4 months continiously growing to the size of my daughter's head! No lie, it was about the size of a small ball. It was HUGE!!!
The MALE doctor didn't know what it was. He snickered at the pain I said I was having. I told him to look carefully because the thing is pretty huge and I need something done about it. Then I told him to imagine his nuts to swell that big, that stopped almost all the snickering.
He went to go look up what it was, when he came back it was to tell me what it was. He suggested we put a word catheter in it. (I now regret this) He told me to keep it in place for 14 weeks (another mistake, after much research it's only supposed to be 4 weeks max).
He drained my cyst/tumor. The smell was awful. My mother was there crying, holding my hand telling me it was disgusting. Know how he drained it? He jsut shoved a needle into it and it popped. Excruciating pain. He was trying to numb me up. It didn't work. So there I am screaming my head off, my mother crying, and this jerk has the nerve to say "gee look painful".
Weeks pass, the catheter falls out at 13 weeks. I go through a good 3-4 more cysts and draining before I make a resolve to get this completely fixed. I go back in to the doctor, I see a female doctor this time. She tells me she's had it before. She refers me to a specialist. We find out I'm pregnant. I go through an entire pregnancy with another huge cyst. It stays there for over 13 months. Never draining, never stopping the pain. I'm popping pain pills like nuts. I recently moved. Just had my 2nd daughter. FINALLY I can do something about this again.
As of about 3 weeks ago, I saw another specialist. She told me the statistics.
- Women dealing with this under 30: 2% of all women in the world
- Women dealing with recurring cysts: .001% of those previously mentioned 2% women.
I am a rare breed, apparently. She goes on to tell me that it has been rumored that it is actually GENETIC, or so she thinks. My mother has had ovarion cysts, my grandmom has had bartholin cysts. This makes complete sense to me. She tells me she wants to do a marsupialization on it.
I am currently scheduled to have mine done tomorrow. As for the up and walking around in 2 days, that's a lie. There is a high risk for nerve damage (50%), and a high risk of recurrance (45%) with just the marsupialization when it's done on women like me. With the excision (removing the gland) the recurrance will drop to 15%, they will be doing this if the gland becomes a problem during the surgery.
Since some of these posts are old, I thought I'd throw that information out there. I've tried everything I could find on the internet to get rid of these cysts. Herbal rememdies, pain killers, antibiotics, none of it worked. Those sitz baths btw, they prescribe that for everything...and seriously, never worked for me not even post-childbirth.
Here are some facts some of you may want to know about Marsupialization that my doctor told me.
- You have a risk of hemoraghing (spelling?)
- You may need a blood transfusion
- You need to pick out your anethetic, and there are over 100s to pick from (how you will be doped up)
- You will have a therapist assigned to you afterwards
- It is a walk-in, walk-out same day proceedure lasting total 3 hours
- You DO have a chance of recurrance, but this helps lessen it
- They MAY need to do some minor surgery on important parts on you, like your uretha/uterus/etc, IF the cyst has grown so big and up that far
- They MAY need to remove dead tissue (they do with me)
- You will be on required bedrest for at least a month, some women take up to 3 months to just be able to sit down
- It MAY cause nerve damage, resulting in ghost pains
- It MAY affect your future sex life, not being able to get wet etc
- It WILL help you stop getting pain when you get turned on (happens to me), will stop the fevers (happens to me), will stop problems getting wet (happens to me)
- They MAY need to repair your bartholin cyst tube (leading to the cyst) or remove it all together
- As for the clown that stated that they were nauseous because they didn't eat before the surgery, I'm going to call junkies on that. You are told not to eat after MIDNIGHT the night before, and the surgery is usually scheduled at 6am-9am. Not that long without a snack, eh ladies?
- Do not take any pain pills within 10 days of your surgery because it will dillute your blood.
Because I am such a rare breed, I have dead tissue outside of my labia. They will be removing a part of my vagina as well. Apparently the recurring cysts caused dead tissue, and that tissue needs to be removed.
Overall, I believe the nuts that talk about herbal remedies...are nuts. There are SOME things that can be fixed with herbs. This is NOT one of them, at least for me.
There is no common cause for this. Don't let anyone tell you that you are dirty/disease filled. I have told every single one of those doctors off when they asked me that question. You will have worries about looking like a freak, you will be VERY depressed because this is a lifelong thing that will never go away, and you will DEFINATELY at some point consider this surgery. In a few days I'll let you know how I'm feeling then.
I'm one of those chicks that would rather limit the chance of recurrance than know for a fact I was going to have this for such a long time. Like I said, everyone is different, but these are ALL the facts that I was presented with myself. I wanted to personally put a stop to all of the fake rumors going around about this surgery and the cysts in general (which are also referred to as benign tumors).
By the way, my word catheter was inserted completely wrong by that MALE doctor. I have since been told it will take ANOTHER surger to repair the damaged tissue.
Thought I'd also add that it's also called a TUMOR because if they drain it and do NOT remove ALL of the cyst, it WILL grow back.
They CAN use lazers on it, but prefer not to because obviously lazers are not that reliable in this day and age. Especially for such a SMALL, SENSITIVE, easy to mess up proceedure.
The dead tissue occurs when your cysts POPS (like other women have said they purposely done to themselves, bad idea). The icky fluid inside will leak into other various parts of your body and fester..make it worse and destroying your tissue in the process.
That's all I was told, as of this morning at my appointment with my anethesiologist.
~*~ January 21, 2008
I've had the marsupialization done. Like I promised, I'm going to update for you. The pain is nothing compared to SVD, severe vaginal delivery, of my two kids. This is completely managable pain. I'm sitting down, walking some-what, and even attempted to play with my eldest today.
Basically surgery went like this, went in did my vitals. They amazingly lost my lab work (gah!). I had to give more blood. After that it was a bunch of waiting in about 3 different waiting rooms. I showed up at 5:40am. Because I am allergic to latex I had to be first one to have surgery that day. At about 7:30am they were inserting my IV and giving me pain medication.
I don't remember a thing. I was asleep the entire time from 7:30am till noon. I went home at noon, my husband drove. Don't bring your kids to wait around like we did, it's a major hassle for you.
They have me on vicodin, perceset, and motrin. The vicodin has been make me have hot flashes and puke like once an hour. It helps a lot with the pain though, so I'm dealing with it.
It doesn't hurt to pee as much as it did before, and I'm actually sitting down in my computer chair with a pillow under me while I write this.
Compared to stitches after childbirth, this is nothing. Just tired of the puking. lol
~*~ January 26th, 2008
I'm back to basically normal. I've slowly adjusted to the vicodin. Bad reactions all over the place. Now, I'm used to taking it. I don't bother taking it if I'm not much pain, and don't take it at night. It does make me blurry and sluggish, so I can't drive. I don't take the perceset (spelling?), or the motrin. Just the vicodin when I need it.
I am chasing my girls, and barely having to rest. This is a LOT better than giving birth. ;P I feel like I was worried for nothing now. The stitches itch but that's about it. Oh, and I need to be really slow/careful when I move around. Learned yesterday that when I tripped on a toy, it hurts like hell.
They told me no sex for another 3 weeks, but I feel ready for it in about A week. They said no lifting anything more than 2lbs for a month, yet I was lifting my 6month old the day OF with no problems. I'm now at the stage to start picking up my 3 yr old with barely a problem.
So far healing is great. There has been some discharge, and the bleeding stopped within 2 days. I noticed I'm not having any more pain when I get turned on, no problems peeing even after the surgery (TY GOD!), and no problems getting wet - it's like I'm a constant fountain!
Only complaint...wish they would have told me it was going to be this easy and other women didn't act like it was the end of the world to get this surgery. This is by far the easiest thing I've done in my life.
Childbirth is about 100% harder than this. ;P Anyone that compains about this surgery really needs to try giving birth to two kids, pre-labor pains hold much more pain than this. And post-labor stitches. Wow. Don't even go there with me. This is completely EASY to handle.
Pain has gone down from pre-cyst 11, to about a 1 with the medication. Without medication it's about a 3-4. Not really bad at all.
I expect to be back to normal next week. No complications, no problems. If I do get another cyst, I'll consider just removing the other gland. It's the same thing I'm going through now. No biggie. Don't know why others had so many problems. I can honestly say this is the first time in a long time that I feel normal. It's great.
~*~ February 1st, 2008
It's been about two weeks. I ran out of vicodin within a week and a half. (30 pills, just in case I was a pill pusher or something..dunno?) The motrin was completely worthless, and didn't bother taking any of the other pills they gave me. I'm living off of advil.
Pain is small. About a 1-2 daily without even advil. I did have a hiccup after surgery. I started bleeding randomly, a lot. Almost went to the emergency room. Waited it out a few days, and it's stopped again.
Stitches are really starting to itch. Have started having sex again. Hurt the first few times (started 2 days ago), otherwise it's just a little tender.
Back to normal activities. Moving a little slow, but not much. Picking up things, bending over, peeing , sex. Everything is about normal.
The hole where they cut for me to drain inside is getting smaller. It's about the size of a pencil eraser now (the very small ones). Have been having discharge, bloody, brown and gross. Nothing major. It'll stop in another week I'm told.
I'm like a fountain, can't stop getting wet down there. Kind of odd. Otherwise no complaints. It was a great, and very sucessful surgery. Stitches are water-solluble so they should come out on their own in time. Sitz baths are awesome to just relax in but otherwise don't really help much, and kind of hurt to put myself in the water.
Vicodin reactions were the worst. Puking every hour, I lost a good 20lbs (I look like skeletor now), and couldn't keep anything down. I ate a piece of pizza yesterday and kept it down, was proud of myself. Besides the vicodin and my hubby having to take off a few weeks of work, this wasn't that bad.
~~~~~~
Obviously, this was several years ago, and I was having false hope. I have now come back down to earth and realized the reality of the situation. The marsupialization did shit.
Tuesday, May 10, 2011
Recurring Bartholian Cyst (Update 2)
Someone asked me previously for yet another update and some advice to future women with this issue. This is it, as promised. Please ignore any typos.
I couldn't get the interactive radiologists to go thru my veins and close it off. However, I did get the nerve ending killer treatment instead, and I went in on an earlier date to have them completely remove old scar tissue (and the cyst again). Basically, it's an out-patient proceedure this time (again this term is used to inaccurately describe your pain as you feel like shit even if you were to stay in the hospital). They sit you down on the exam table, then take a needle that has been filled with heavy doses of alcohol and stab you with it. I was stabbed about 9 times the first time I had it done (which was recently). Along with the alcohol they also inject a numbing agent, which is supposed to help with the pain. It doesn't at first.
It was extremely painful, I know I kept asking if we were done yet. I bit my husband's hand just so I wouldn't scream. I pretty much needed assistance getting out of the doctor's office and was in bed for a good two hours afterwards. It took a long time for the numbing medication that they used, to actually kick in. The numbing medication lasted about 4 hours after kicking in, but you still feel like shit afterwards.
Since getting it done, I do randomly feel like I have a urinary tract infection (even though it is not one, and in the same exact spot they stabbed me). It is a painful burning sensation that stays there for a good hour after it randomly shows up. It DOES help with leakage problems, at least in my case. I noticed within a few days of having this done, that my cyst was actually starting to drain on it's own again. This is a good thing.
However, the bad part is that this treatment needs to be done every 5-6 months AND so far I cannot tell if it has been worth a damn. I honestly haven't had it done long enough to know for sure. I can't tell if my body is naturally pushing out the gook, or if the nerve-ending thing actually helped. I will update to let you know if it HAS had any effect (positive or negative) on my cysts.
Someone also asked me for advice to the women in my same position. My first advice is to ignore all of those doctors that tell you that you're crazy - or pretty much anything else you don't like to hear. Some of it IS valuable to know, but most of it is worthless and does NOT pertain to this. I would also STRONGLY suggest to ignore the doctors who just want to tie your tubes. DO NOT DO THAT IF YOU EVEN THINK YOU HAVE A .001% CHANGE OF WANTING ANOTHER KID!!!! Also, you after a while of the doctor's visits, you WILL be able to tell who knows what they are talking about and who doesn't. I keep a mental checklist everytime I see a new doctor, and make sure they know what they are doing before they do ANYTHING to me (this includes check-ups).
I will straight up tell you that my doctor has recently suggested that I get a hysterectomy. This would remove any hopes I have of having that son I always wanted. Yes, I even picked a name. I decided that I AM still young, and I WOULD like to keep trying for yet another kiddling. I know my chances of getting pregnant are very slim (mainly due to this condition and scar tissue that has been building up). However, I am VERY young to have one. Most women have one at the age of 40. I am NOT 40. I am still about 10 yrs shy of that. This is also an automatic default for a lot of doctors. Think of it as the "cure-all", to any feminine issue. I also went into a serious depression because of this suggestion. (It was suggested about 3 weeks ago) I will let you know, for your own future reference, that a hysterectomy is the 2nd most common surgery among women (C-section beats it) and it is usually done on women between the ages of 42-55. This is obviously a big number of women getting it done (I'd prefer not to be one of them at the ripe age of 27), and it isn't even supposed to be done for something like a Bartholian Cyst (cancer is the #1 reason)...adding on that I'm WAY below the usual age of it.
Also, as due to my botched surgery, I would DEMAND that you do NOTNOTNOTNOT sign the waiver that all those doctors will give you. NEVER, EVER SIGN A WAIVER OF LIABILITY. It's always in those stacks of paperwork they give you to sign, and honestly, they just slide it right in there so that you can't sue the shit out of them later if they fuck up. NEVER SIGN THIS! You NEVER know if the doctor will screw up or not. Even if the doctor knows what they are doing, do NOT sign it. If they ask you why, tell them this: "I do not sign paperwork like this when I cannot be guaranteed 400%+ success rate on (whatever you're doing). I don't believe that anyone in this office is god or godlike, therefore, I'd like to protect myself and my rights." Even if you sign it for a checkup, they can later pull that paperwork out of their files later and hold it against you. So, even for a check-up, DO NOT SIGN IT!
My second advice is to GOOGLE! I am a google fiend now. I googled my ass off trying everything I could to come up with home remedies, researching the different types of surgeries, researching other women who had gone through this (though most stories were bogus and full of such home remedy crap that I gave up for a while) and of course researching the risks/side effects. I know I said before to ignore the home remedies, but hell...they might work for you. I know from personal experience, that I was willing to try ANYTHING to make the pain go away. I mean it. ANYTHING. None of them worked for me, but maybe someone else will get lucky.
I'd also suggest to get a therapist or have a seriously devoted husband. I rant and rave to my husband a LOT about this. He doesn't understand EXACTLY what I am going through, but he has been there for almost EVERY surgery/appointment since the botched surgery. Most women go to appointments without their spouse, but I took (and continue to drag) mine with me. I liked having someone else knowing exactly what I was up against, and having someone to yell at when needed. I also liked that after the first few appointments, he got the general jist of the doctor's attitudes. This was very helpful for when the male doctors wanted to treat me like a complete moron. It was also my way of letting him know that it wasn't all just "in my head".
I'm going to expound on this a bit more. It seriously hurt our sexual relationship to have to go through this constantly. As is, we barely have sex...and it's usually only when I feel up to it. I swear, he's part gay sometimes. I love him for it. It took him a long time to understand and generally avoid the shit out of me when I was in pain. It also took ME a long time to come to grips that I was NOT some unattractive, disfigured blob. I know it doesn't look exactly right down there, and yes sometimes I bitch about it, but I know that my husband loves MY body. If he didn't love me so much, and my body, then he would have left a long time ago.
This WILL hurt your relationship. I am a strong believer in "making love", and in order to do so - you need to feel a serious emotional attachment to that person. We had a really hard time coming to cope with the idea that we just can't have sex every day of the week (especially when we USED to do it that much), and that it most likely will NOT be enjoyable for me. We had to come up with our own way of getting around MY pain in order for me to enjoy it after the fact. We had a hard time getting around our sex life, and making time for ourselves (especially with two kiddlings running around). We are obviously military, so we don't usually have family around. Instead of hiring a babysitter (who might be a pedophile), we decided that our "date night" would not involve sex and would just be a movie and lots of snuggles (and kisses!).
Keep a list. I keep lists of everything now. I made a journal documenting every single little thing about this condition. In doing so, I realized that my cyst was recurring a lot just because of the amount of stress I was dealing with. When we minimized my stress, we minimized the recurrence rate from every week to every two weeks. It also helps you remember exactly what you have done before, and what did NOT work. It helps the doctors to realize that you are dead serious about your condition, and want a solution to it. It helps you keep tabs of what works and what doesn't. It helps you to keep tabs on how often the recurrence is, without having to rely on your memory (which mine tends to be slightly faulty when it comes to dates).
Get help! I can tell you right now that I had an enormous amount of trouble trying to take care of a newborn by myself, the bills, etc, without any help. My husband was deployed when my brother decided to stay and help me. I cannot even begin to describe how much this has helped!!! They don't need to live with you. They just need to be able to take the kiddlings away, or pets away, for a day or two once in a while. My brother still lives with us, to this day, and he takes the kids every other week for uncle-niece time. (And before you ask, he never wants to settle down and I honestly don't think he cares if he works a full-time job) Even just a little "me time" is well-needed. Shit, I even use him to babysit the girls when we DO decide to go out on our date night. It IS a huge help having that extra hand, and I honestly didn't realize how much I NEEDED it when this first started. It was also helpful that it was an immediate family member, just because of the rumors the in-laws were spreading around (etc). Mu hubby doesn't worry about my cheating on him with my brother (EW!), and my brother knows if one hair on my kids' head is out of place - he will die very slowly. I am dead serious about my kiddlings. No one hurts them, or they will pay. (No, he is NOT a molestor etc. He treats them like they are his own, and it's very cute.)
If you DO want to explain to someone about your medical situation, that you try to keep it short and simple. Like most doctors, most PEOPLE, do NOT understand. I cannot even BEGIN to explain to you the headache I get when I talk to the in-laws. Not only do they give you the pity looks, but they judge the shit out of you. My husband has taken a LOT of shit from his parents. While they understand that it is a medical issue, they do NOT understand why I'm "so lazy". So be VERY careful of how you phrase things, how you explain things, and WHO you tell.
I know I already suggested to get a therapist, but another main reason you might want to look into having someone to nonstop talk to is because of the depression. I have gone through so many bouts of depression because of this, that I had to be medicated for a few months (panic attacks, the whole 9 yards). I go through several emotional stages during a week.
Here are some stages to look out for:
- Depression: I mainly felt depressed lately due to the hysterectomy. I had to deal with my feelings of loss. I felt like that if I couldn't have that one last child, that my life would be less happy or less full. I was mistaken. Regardless of whether or not we adopt, have another ourselves, or do fostercare (adopting and fostercare is not an option for military families in this state), I felt like a part of me would be missing just because I had removed a huge part of my body. This was somewhat correct. In talking with my hubby about the hysterectomy, I came to realize another feeling of being less of a woman because of all of this. I felt like I was already less of a woman, and to have someone completely remove yet another BIG part of me...that was a huge kick to the face.
Another reason why I felt depressed was because of the pain. I'm not going to lie to you, I went through those days where I felt like I wanted to kill myself. The pain was intolerable. You WILL feel this way too. Eventually, you'll consider it just to stop being in pain all of the time. It's completely normal to feel like this. Don't let anyone tell you that you are wrong to feel the way you do! Just, for the love of god, don't kill yourself.
When I was first diagnosed, after my marsupialization, I went into yet another depression streak because I felt like less of a mother. I mean, what kind of mother doesn't take care of her kids everyday? This kind does, and is fucking PROUD of the days she DOES get out of bed to kiss her monsters. I'm sure some of you will understand when I say, you feel like you've been demeaned as a parent (and as a female) when either you can't take an active role in your children's lives or when you need to ask someone for help.
I'm sure some of you others out there WILL come across the random crying fits. This is normal. It doesn't go away, or at least, it hasn't with me thus far. I DO randomly see babies on the street and just burst into tears. I DO watch the news (every little thing will trigger my tears lately) and randomly have to excuse myself.
- False Elation/False Hope: I listed this one because many of you out there have been through this feeling before. I felt a LOT of false elation (fake happiness), whenever a new doctor would tell me that they have a cure for it. I would leave the appointment feeling as giddy as a little girl on Christmas, and then after much research and my own knowledge...realize these people are full of shit. I also dealt with this emotion after every single surgery did NOT work. I tried to remain positive, but after a while, it always left a bad taste in my mouth.
- Embarassment: I feel embarassed a LOT about this. I barely informed my OWN mother of what was going on, let alone my husband's parents or anyone else for that matter. When I got the first word catheter installed, I went through the initial "is everyone staring at me? do they know?" stage. After that stage disappeared, I started comparing myself to my husband's ex-girlfriends (even if he never had sex with them) or any other female we EVER came in contact with. It didn't matter if we were at a super market shopping for groceries, I found myself comparing to EVERY female we saw. This has faded over time, but it still resides in the back of my head that I am not 100% whole. I have also started opening open to a few of my closer friends (that actually understand my personallity), and told them a little bit about what has been going on. (I can't stand the pity in their eyes, OR the confusion - having to explain it 200x is not my cup of tea.)
Now, the main reason why I started opening up was to protect my older brother. People were always making comments about how he has been living with us for the last 3-4 years. They always wonder why, and how come he doesn't have a fulltime career (etc). The reason is simple: it's because of me. Until my brother moved in with me (thank god he did), we were barely struggling to take care of ONE kid. He wound up visiting one week, and just never left. I think a part of him realized that I would never ask anyone for help, and so he has just stayed here. Shit, some people (like my in-laws), think that I'm having sex with my brother. LOL They don't even connect the dots, and after numerous times of telling them that is NOT the case, they still don't stop giving him "that look". It's so fucking creepy.
- Less Than A Woman: You know it, I know it. Anyone who has this issue feels this way. Your husband (if he's an ass), might think this about you or might have thought it in the past. Just because you have this issue, you are NOT less than a woman than any other female. This is a hard feeling to overcome, I have not mastered it yet. My basic line of thought to control this is: I have a vagina, I am a chick just as much as she is. I don't know what else to suggest, as that is what works for me. LOL
- Unattractive/Not Sexy: You are NOT unattractive because of this. IF you are married, your husband didn't marry you for your vagina. That was just a neat perk. You are JUST AS SEXY AS BEFORE THIS HAPPENED! If you don't feel that you are as sexy as before, I suggest talking to your spouse about it. I talk to my husband about this a LOT. He soothes all of my fears and continues to SHOW me how attactive I am.
- Tired: Some days, even on my good days, I just feel tired as shit. I don't want to move, and I think that if I DO move, I might keel over and die right there. You won't. Get out of bed if you can.
I'm sure there are other emotions I go through, but that is just off the top of my head. The feeling of being in pain, is an obvious one to me so I didn't even write anything about that. Anyways...
Do NOT use hemorrhoid cream. Some doctors will suggest this. DON'T USE IT!! OH MY GOD PAINFUL! While you cyst "may" look like just a bump, or you might THINK that the cream will help shrink it - just imagine all of that gunk inside of the cyst or building up around it. Where do you think it will go? Nowhere if you have a blockage (which is obviously the case if you have a cyst). This is one of those "home remedies" that you absolutely WANT TO AVOID!
You'll need to work on your sex. I know I wrote this, but this was a major issue for us. We tried everything from the numbing gel to obstaining for months. It took us a long time, but we pretty much had to relearn how to have sex with each other. You WILL have drying there if you had a marsupialization. Expect it. If it happens, either have some KY sittiing around or just halt what you are doing until you are NOT dry. Try not to have more then 3 times a week. Sperm (etc) can build up in your cyst wall and will NOT be pretty coming back out.
My last bit of advice would be to not over-exert yourself. Don't go run 20 miles today. Run 5. The rubbing and sweating is NOT good for your cyst, even if it is NOT there. Also, do NOT wear tight jeans, shorts, skirts, or skorts. They do NOT help. I run around in plaid pj pants around the house and put on a loser pair of pants when I go out. Any rubbing (even during sex) CAN aggravate the cyst. So, be veryyy careful.
That's all of the advice I could think of for now. I'll try to add some more later on. I need to get some sleep.
I couldn't get the interactive radiologists to go thru my veins and close it off. However, I did get the nerve ending killer treatment instead, and I went in on an earlier date to have them completely remove old scar tissue (and the cyst again). Basically, it's an out-patient proceedure this time (again this term is used to inaccurately describe your pain as you feel like shit even if you were to stay in the hospital). They sit you down on the exam table, then take a needle that has been filled with heavy doses of alcohol and stab you with it. I was stabbed about 9 times the first time I had it done (which was recently). Along with the alcohol they also inject a numbing agent, which is supposed to help with the pain. It doesn't at first.
It was extremely painful, I know I kept asking if we were done yet. I bit my husband's hand just so I wouldn't scream. I pretty much needed assistance getting out of the doctor's office and was in bed for a good two hours afterwards. It took a long time for the numbing medication that they used, to actually kick in. The numbing medication lasted about 4 hours after kicking in, but you still feel like shit afterwards.
Since getting it done, I do randomly feel like I have a urinary tract infection (even though it is not one, and in the same exact spot they stabbed me). It is a painful burning sensation that stays there for a good hour after it randomly shows up. It DOES help with leakage problems, at least in my case. I noticed within a few days of having this done, that my cyst was actually starting to drain on it's own again. This is a good thing.
However, the bad part is that this treatment needs to be done every 5-6 months AND so far I cannot tell if it has been worth a damn. I honestly haven't had it done long enough to know for sure. I can't tell if my body is naturally pushing out the gook, or if the nerve-ending thing actually helped. I will update to let you know if it HAS had any effect (positive or negative) on my cysts.
Someone also asked me for advice to the women in my same position. My first advice is to ignore all of those doctors that tell you that you're crazy - or pretty much anything else you don't like to hear. Some of it IS valuable to know, but most of it is worthless and does NOT pertain to this. I would also STRONGLY suggest to ignore the doctors who just want to tie your tubes. DO NOT DO THAT IF YOU EVEN THINK YOU HAVE A .001% CHANGE OF WANTING ANOTHER KID!!!! Also, you after a while of the doctor's visits, you WILL be able to tell who knows what they are talking about and who doesn't. I keep a mental checklist everytime I see a new doctor, and make sure they know what they are doing before they do ANYTHING to me (this includes check-ups).
I will straight up tell you that my doctor has recently suggested that I get a hysterectomy. This would remove any hopes I have of having that son I always wanted. Yes, I even picked a name. I decided that I AM still young, and I WOULD like to keep trying for yet another kiddling. I know my chances of getting pregnant are very slim (mainly due to this condition and scar tissue that has been building up). However, I am VERY young to have one. Most women have one at the age of 40. I am NOT 40. I am still about 10 yrs shy of that. This is also an automatic default for a lot of doctors. Think of it as the "cure-all", to any feminine issue. I also went into a serious depression because of this suggestion. (It was suggested about 3 weeks ago) I will let you know, for your own future reference, that a hysterectomy is the 2nd most common surgery among women (C-section beats it) and it is usually done on women between the ages of 42-55. This is obviously a big number of women getting it done (I'd prefer not to be one of them at the ripe age of 27), and it isn't even supposed to be done for something like a Bartholian Cyst (cancer is the #1 reason)...adding on that I'm WAY below the usual age of it.
Also, as due to my botched surgery, I would DEMAND that you do NOTNOTNOTNOT sign the waiver that all those doctors will give you. NEVER, EVER SIGN A WAIVER OF LIABILITY. It's always in those stacks of paperwork they give you to sign, and honestly, they just slide it right in there so that you can't sue the shit out of them later if they fuck up. NEVER SIGN THIS! You NEVER know if the doctor will screw up or not. Even if the doctor knows what they are doing, do NOT sign it. If they ask you why, tell them this: "I do not sign paperwork like this when I cannot be guaranteed 400%+ success rate on (whatever you're doing). I don't believe that anyone in this office is god or godlike, therefore, I'd like to protect myself and my rights." Even if you sign it for a checkup, they can later pull that paperwork out of their files later and hold it against you. So, even for a check-up, DO NOT SIGN IT!
My second advice is to GOOGLE! I am a google fiend now. I googled my ass off trying everything I could to come up with home remedies, researching the different types of surgeries, researching other women who had gone through this (though most stories were bogus and full of such home remedy crap that I gave up for a while) and of course researching the risks/side effects. I know I said before to ignore the home remedies, but hell...they might work for you. I know from personal experience, that I was willing to try ANYTHING to make the pain go away. I mean it. ANYTHING. None of them worked for me, but maybe someone else will get lucky.
I'd also suggest to get a therapist or have a seriously devoted husband. I rant and rave to my husband a LOT about this. He doesn't understand EXACTLY what I am going through, but he has been there for almost EVERY surgery/appointment since the botched surgery. Most women go to appointments without their spouse, but I took (and continue to drag) mine with me. I liked having someone else knowing exactly what I was up against, and having someone to yell at when needed. I also liked that after the first few appointments, he got the general jist of the doctor's attitudes. This was very helpful for when the male doctors wanted to treat me like a complete moron. It was also my way of letting him know that it wasn't all just "in my head".
I'm going to expound on this a bit more. It seriously hurt our sexual relationship to have to go through this constantly. As is, we barely have sex...and it's usually only when I feel up to it. I swear, he's part gay sometimes. I love him for it. It took him a long time to understand and generally avoid the shit out of me when I was in pain. It also took ME a long time to come to grips that I was NOT some unattractive, disfigured blob. I know it doesn't look exactly right down there, and yes sometimes I bitch about it, but I know that my husband loves MY body. If he didn't love me so much, and my body, then he would have left a long time ago.
This WILL hurt your relationship. I am a strong believer in "making love", and in order to do so - you need to feel a serious emotional attachment to that person. We had a really hard time coming to cope with the idea that we just can't have sex every day of the week (especially when we USED to do it that much), and that it most likely will NOT be enjoyable for me. We had to come up with our own way of getting around MY pain in order for me to enjoy it after the fact. We had a hard time getting around our sex life, and making time for ourselves (especially with two kiddlings running around). We are obviously military, so we don't usually have family around. Instead of hiring a babysitter (who might be a pedophile), we decided that our "date night" would not involve sex and would just be a movie and lots of snuggles (and kisses!).
Keep a list. I keep lists of everything now. I made a journal documenting every single little thing about this condition. In doing so, I realized that my cyst was recurring a lot just because of the amount of stress I was dealing with. When we minimized my stress, we minimized the recurrence rate from every week to every two weeks. It also helps you remember exactly what you have done before, and what did NOT work. It helps the doctors to realize that you are dead serious about your condition, and want a solution to it. It helps you keep tabs of what works and what doesn't. It helps you to keep tabs on how often the recurrence is, without having to rely on your memory (which mine tends to be slightly faulty when it comes to dates).
Get help! I can tell you right now that I had an enormous amount of trouble trying to take care of a newborn by myself, the bills, etc, without any help. My husband was deployed when my brother decided to stay and help me. I cannot even begin to describe how much this has helped!!! They don't need to live with you. They just need to be able to take the kiddlings away, or pets away, for a day or two once in a while. My brother still lives with us, to this day, and he takes the kids every other week for uncle-niece time. (And before you ask, he never wants to settle down and I honestly don't think he cares if he works a full-time job) Even just a little "me time" is well-needed. Shit, I even use him to babysit the girls when we DO decide to go out on our date night. It IS a huge help having that extra hand, and I honestly didn't realize how much I NEEDED it when this first started. It was also helpful that it was an immediate family member, just because of the rumors the in-laws were spreading around (etc). Mu hubby doesn't worry about my cheating on him with my brother (EW!), and my brother knows if one hair on my kids' head is out of place - he will die very slowly. I am dead serious about my kiddlings. No one hurts them, or they will pay. (No, he is NOT a molestor etc. He treats them like they are his own, and it's very cute.)
If you DO want to explain to someone about your medical situation, that you try to keep it short and simple. Like most doctors, most PEOPLE, do NOT understand. I cannot even BEGIN to explain to you the headache I get when I talk to the in-laws. Not only do they give you the pity looks, but they judge the shit out of you. My husband has taken a LOT of shit from his parents. While they understand that it is a medical issue, they do NOT understand why I'm "so lazy". So be VERY careful of how you phrase things, how you explain things, and WHO you tell.
I know I already suggested to get a therapist, but another main reason you might want to look into having someone to nonstop talk to is because of the depression. I have gone through so many bouts of depression because of this, that I had to be medicated for a few months (panic attacks, the whole 9 yards). I go through several emotional stages during a week.
Here are some stages to look out for:
- Depression: I mainly felt depressed lately due to the hysterectomy. I had to deal with my feelings of loss. I felt like that if I couldn't have that one last child, that my life would be less happy or less full. I was mistaken. Regardless of whether or not we adopt, have another ourselves, or do fostercare (adopting and fostercare is not an option for military families in this state), I felt like a part of me would be missing just because I had removed a huge part of my body. This was somewhat correct. In talking with my hubby about the hysterectomy, I came to realize another feeling of being less of a woman because of all of this. I felt like I was already less of a woman, and to have someone completely remove yet another BIG part of me...that was a huge kick to the face.
Another reason why I felt depressed was because of the pain. I'm not going to lie to you, I went through those days where I felt like I wanted to kill myself. The pain was intolerable. You WILL feel this way too. Eventually, you'll consider it just to stop being in pain all of the time. It's completely normal to feel like this. Don't let anyone tell you that you are wrong to feel the way you do! Just, for the love of god, don't kill yourself.
When I was first diagnosed, after my marsupialization, I went into yet another depression streak because I felt like less of a mother. I mean, what kind of mother doesn't take care of her kids everyday? This kind does, and is fucking PROUD of the days she DOES get out of bed to kiss her monsters. I'm sure some of you will understand when I say, you feel like you've been demeaned as a parent (and as a female) when either you can't take an active role in your children's lives or when you need to ask someone for help.
I'm sure some of you others out there WILL come across the random crying fits. This is normal. It doesn't go away, or at least, it hasn't with me thus far. I DO randomly see babies on the street and just burst into tears. I DO watch the news (every little thing will trigger my tears lately) and randomly have to excuse myself.
- False Elation/False Hope: I listed this one because many of you out there have been through this feeling before. I felt a LOT of false elation (fake happiness), whenever a new doctor would tell me that they have a cure for it. I would leave the appointment feeling as giddy as a little girl on Christmas, and then after much research and my own knowledge...realize these people are full of shit. I also dealt with this emotion after every single surgery did NOT work. I tried to remain positive, but after a while, it always left a bad taste in my mouth.
- Embarassment: I feel embarassed a LOT about this. I barely informed my OWN mother of what was going on, let alone my husband's parents or anyone else for that matter. When I got the first word catheter installed, I went through the initial "is everyone staring at me? do they know?" stage. After that stage disappeared, I started comparing myself to my husband's ex-girlfriends (even if he never had sex with them) or any other female we EVER came in contact with. It didn't matter if we were at a super market shopping for groceries, I found myself comparing to EVERY female we saw. This has faded over time, but it still resides in the back of my head that I am not 100% whole. I have also started opening open to a few of my closer friends (that actually understand my personallity), and told them a little bit about what has been going on. (I can't stand the pity in their eyes, OR the confusion - having to explain it 200x is not my cup of tea.)
Now, the main reason why I started opening up was to protect my older brother. People were always making comments about how he has been living with us for the last 3-4 years. They always wonder why, and how come he doesn't have a fulltime career (etc). The reason is simple: it's because of me. Until my brother moved in with me (thank god he did), we were barely struggling to take care of ONE kid. He wound up visiting one week, and just never left. I think a part of him realized that I would never ask anyone for help, and so he has just stayed here. Shit, some people (like my in-laws), think that I'm having sex with my brother. LOL They don't even connect the dots, and after numerous times of telling them that is NOT the case, they still don't stop giving him "that look". It's so fucking creepy.
- Less Than A Woman: You know it, I know it. Anyone who has this issue feels this way. Your husband (if he's an ass), might think this about you or might have thought it in the past. Just because you have this issue, you are NOT less than a woman than any other female. This is a hard feeling to overcome, I have not mastered it yet. My basic line of thought to control this is: I have a vagina, I am a chick just as much as she is. I don't know what else to suggest, as that is what works for me. LOL
- Unattractive/Not Sexy: You are NOT unattractive because of this. IF you are married, your husband didn't marry you for your vagina. That was just a neat perk. You are JUST AS SEXY AS BEFORE THIS HAPPENED! If you don't feel that you are as sexy as before, I suggest talking to your spouse about it. I talk to my husband about this a LOT. He soothes all of my fears and continues to SHOW me how attactive I am.
- Tired: Some days, even on my good days, I just feel tired as shit. I don't want to move, and I think that if I DO move, I might keel over and die right there. You won't. Get out of bed if you can.
I'm sure there are other emotions I go through, but that is just off the top of my head. The feeling of being in pain, is an obvious one to me so I didn't even write anything about that. Anyways...
Do NOT use hemorrhoid cream. Some doctors will suggest this. DON'T USE IT!! OH MY GOD PAINFUL! While you cyst "may" look like just a bump, or you might THINK that the cream will help shrink it - just imagine all of that gunk inside of the cyst or building up around it. Where do you think it will go? Nowhere if you have a blockage (which is obviously the case if you have a cyst). This is one of those "home remedies" that you absolutely WANT TO AVOID!
You'll need to work on your sex. I know I wrote this, but this was a major issue for us. We tried everything from the numbing gel to obstaining for months. It took us a long time, but we pretty much had to relearn how to have sex with each other. You WILL have drying there if you had a marsupialization. Expect it. If it happens, either have some KY sittiing around or just halt what you are doing until you are NOT dry. Try not to have more then 3 times a week. Sperm (etc) can build up in your cyst wall and will NOT be pretty coming back out.
My last bit of advice would be to not over-exert yourself. Don't go run 20 miles today. Run 5. The rubbing and sweating is NOT good for your cyst, even if it is NOT there. Also, do NOT wear tight jeans, shorts, skirts, or skorts. They do NOT help. I run around in plaid pj pants around the house and put on a loser pair of pants when I go out. Any rubbing (even during sex) CAN aggravate the cyst. So, be veryyy careful.
That's all of the advice I could think of for now. I'll try to add some more later on. I need to get some sleep.
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