I hope that my story will help other people in the future with their own problem. Mine is a little off the wall from the usual diagnosis and proceedure. I'm sure some of you out there have just googled "bartholin cyst" and accidentally come across my site. I hope you take the time to read my story, and hope that it will help you deal with the many issues you will come across in your own journey with this problem. Mind you, some of the things I mention in my post are a little out of date since I started having my surgeries in 2000. I will make sure to enter in the current information from my latest surgical update.
I'll leave out my attempts with home remedies and the 2nd word catheter for the sake of space. Let's just say that the home remedies don't work, and whoever suggests them should fuck off. The 2nd word catheter was only good for draining the cyst, and it grew back in less then a week. Also, remember when they are draining it not to look. It is disgusting and you don't want to see it.
I have been diagnosed with a recurring bartholin cyst. I was diagnosed when I was 15 - I am obviously much older now. I didn't start to realize something was truly wrong with me under after I had my eldest daughter. It hurts to walk, it hurts to have sex, it hurts to even think about it. My cyst recurrs every 2 weeks and grows to the size of a baseball. It is located on my left labia wall, and has officially disfigured my personals.
Let's just start out with that my particular type of cyst that regrows even after a marsupialization is rare. I am one of 3 people world-wide that has been diagnosed with this condition. I am not 100% sure of that number, I just know that rare=rare...and if my doctor says 1 of 3 out of 3 billion people...that's rare enough for me to call it rare.
Okay, I have tried the sitz baths. They are pretty much a normal bath, sometimes with sea salt, and the water temperature put up to boiling. Or as hot as I can fucking handle before I need to get the hell out of the water. Those stopped working for me a couple of years ago. I only take them now when I am in too much pain or just out of routine. I take one once a day, mainly in an effort to get rid of the cyst that has popped back up.
I have tried the word catheter. Twice. We are military, so our health insurance only covers so much. We have also lived on base for the last 10 or so years. So, we went to our local base doctors to have them deal with this problem. The first time I ever saw a doctor about it, HE (yes he, first time I've ever seen a male doctor) didn't know what the fuck it was. In a general word catether "installment", you are given a local anesthia and a tube is placed inside to help drain the fluid. It is exceptionally painful if done incorrectly.
My first word catheter was incorrectly done. The male army doctor went to give me the general anesthetic and popped my cyst. For anyone out there that has had this happen, it hurts more then childbirth. (Sometimes if you take a sitz bath this can happen too, and it hurts almost as much. I suggest not taking sitz baths for that reason.) So, not having any pain medication in me...he went to go look up how to "install" a word catheter. This took a good 45minutes of waiting, and even after asking for someone more experience - we got none. He then took a scalpel and cut a slit where it wasn't supposed to go and inserted a white tube into the hole. After telling me to keep it in for 14-16 WEEKS, he sent me home.
There are a few problems with what he had done. First of all was the pain medication. I had no pain medication during the entire "out patient" proceedure. It was very painful just sitting in the car to go home. He also inserted the tube into the wrong place and the tube was half sticking out. I was on bedrest for those 14-16 weeks out of sheer stupidity on his part. Next, you do NOT keep it in for 14-16 weeks. It's 14-16 DAYS. So, right after having a newborn and my husband being deployed...I was on bedrest for 14-16 weeks. I lasted 15 weeks before the tube fell out. It was excruciating pain everytime I moved, mainly because the tube was inserted incorrectly. I couldn't even put on pants by the time I went into the hospital when it fell out.
Upon going into the emergency room, I discovered what the "doctor" had done. My husband was on leave by then, and helped me get into the car and figure out what we needed to do to fix this "problem". We were in the shock of our lives. Eventually, we filed a complaint against the guy who is now deemed the "disfigurer". My labia is forever disfigured because of what he has done to me, and now I will need to undergo yet another surgery to fix it. I'm not looking forwards to it.
Some side effects of the botched word catheter are continued cysts, and an even bigger problem. My cysts were originally the size of a baseball (or so my real doctor that removed my gland said), and now because of the botched word catheter - they are about 10% bigger. More fluid and ick is getting built up in there because I have a hole in a place that I shouldn't. The fuild is just leaking out - well actually, not even leaking...but botched shit is making it worse. It was the most painful time of my life and it will continue to cause me pain.
Over the next 5 years or so, I saw various doctors. Some treated me like I was insane and didn't know what I was talking about. Some treated me with sympathy because they knew exactly what I was talking about. Some just put me on medication like oxycodone for the pain and said to hell with it. Eventually, I came across one doctor who specialized in my particular problem. He suggested a marsupialization. I immediately said yes to the surgery. The pain and general annoyance of the whole mess was starting to piss me off, and I wanted it to go away for good. I was sorely mistaken.
We removed the gland. Another 4 weeks or so of bedrest. I was slowly getting used to the bedrest. Every 2 weeks or so (to this day even), I cannot walk and need to lay down in bed to recooperate. My husband, children, and brother have all gotten used to this. I even had to have my brother come out to help raise my children for me when I cannot. I'm sure other people with this issue do not have to have the samy baby-ing, however as I said - rare. Mine always grows to the same size and always is painful - especially after the botched word catheter.
After the gland was removed my husband came back from his 2nd tour in Iraq. We realized about 2 months after it was removed that the other gland was now starting to get cysts as well. We are also told at our check-up appointment that it could be hereditary. My mother had ovarion cysts every 6 months, so I can see why the good doctor claimed that. I have not removed the other gland. The main reason I have not is because the cysts on the other side are not as rampant, and because I am having dryness in the side where the gland was removed.
Some side effects of the marsupialization were vaginal dryness during sex. This isn't normal "oh, I'm not turned on" dryness either. This is a "we're in the middle of having sex and suddenly I'm not wet". Not only does this cause a lot of sudden pain, and instantly remove your ability to WANT sex (we were trying for our 3rd child and had to give up on it), but it also causes the cysts to come back because of the pain that the sex caused. We were eventually prescribed a sort of KY jelly to numb my vagina so we can attempt for our 3rd child. The numbness was actually even more of a deterrent and we gave up for good.
I have been to several doctors since then. All of the doctors I have seen have told me I am insane and played it off. I even had one doctor turn to my husband and tell him to "explain to your wife later what I mean". I was even told once that it was really an infection, which it obviously isn't. The rareness of this condition causes people to doubt you. Mainly because they believe that by removing the gland, it will go away forever. They lie to you when they say that. Don't believe them.
Okay, so now you are caught up to date. I am currently seeing a specialist in this. She's actually writing a paper about me - go figure. She is the one that prescribed the KY for us, and for now has put me on daily pain medication. She is also very good at her job. After much research into my personal problem, she has come to the conclusion that during my 2nd pregnancy with my youngest - I had a cyst there the entire time I was pregnant and they couldn't do anything about it in fear that the baby might be hurt - that my pain sensors in my labia have been turned backwards.
Due to the fact that the cyst was there for so long, not being attended to, my nerve endings now accustom pain to excitement and excitement to pain. Meaning, whenever we try to have sex - it hurts like a bitch. I am on medication for it. I cannot wear jeans still. I'm one of those young chicks wearing the mom jeans. It disgusts me. Well, we have a solution for it hopefully.
I'm going in for another surgery. We are going to remove the cyst again, a part of it was missed and is obviously regrowing back, and we are going to kill off my nerve endings in my vagina with a heavy dose of alcohol. They are basically going to inject nerve-killer into my vagina every 6 months. Nerves have a tendency to grow back, apparently. Damn buggers need to stay gone. We are also going to remove some built-up scar tissue. The original botched word catheter and marsupialization has caused a lot of scar tissue to build up and block my pipes. I am hoping in the near future to fix the cosmetic issues. (The defigurer has since been fired)
So, now, I sit here actually praying for the cyst to come back so she can take a picture of it and get me scheduled for surgery. Let's hope I can stop taking daily pills and can actually get working on our 3rd child. I'll let you guys know how the experimental surgery goes. Shit, to be able to play with my kids whenever I want would be a miracle. That is my goal. I'm sure my 6 yr old is tired of mommy always laying down on the couch or in bed when she is awake. I WANT to be normal, and I've wanted it for a long time. I hate feeling like this, but if there is a light at the end of the tunnel - I will start going to church again. ;P
PS. It is completely natural for you not to feel like a woman or feel like less a woman because of this. I have gone through bouts of depression because of this and have basically limited all of my interraction with stress-inducers. My cysts tend to recurr when I am more stressed. I had to completely stop handling the bills, and give them over to my husband. That was a sure sign of something seriously wrong with me. My husband has gone through bouts of depressions as well. Lack of sex or that physical contact WILL have a serious effect on your marriage. I hope you all are in for a rocky road, because I sure as hell have been and it has taken all that we have to stay true to each other in a happy marriage - with no sex.