My experience of bartholin abscess/cyst

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I have been reading other peoples experiences for a few years since I was first diagnosed with having an enlarged bartholin gland around 4 years ago. I thought it was about time to write my own experience down.

I first noticed a small, hard lump on my left side. It wasn't painful, but it was slightly noticeable from the outside. I was told by the doctor that it was completely normal and unless it got bigger or painful I should leave it well alone so I did. I forgot all about it for a few years before I got a suspected infection while I was away in America. It swelled up to a massive size and I couldn't sit down properly. Eventually it calmed down and when I came back from America I went to the doctors. I was given antibiotics, but by that point it seemed like it was there to stay. It was obstructing and making intercourse difficult and uncomfortable, plus it wasn't nice to look at. 

I was sent to a gynocologist who suggested that it needed draining as it was an abscess that would not go away by itself. It was the first time I would have surgery or be in hospital and I was incredibly nervous. They said they would do a Marsupialization on it. It was a very very horrible and traumatic experience for me. I was in quite a lot of pain after the surgery but they sent me on my way with no painkillers or antibiotics and no aftercare. I was too out of it after being given tramadol to really ask questions. It was only when I got home and the painkillers began to wear off that I realised that I had no idea what to expect. My discharge letter stated that the gland had been removed and I presumed that was the reason for the discomfort. The whole area was incredibly swollen and I had bruises all over the area. I was told by the surgeon before I left that they had to 'dig' around the gland to make sure it was an abscess and not something more sinister. I went to my local GP the day after and my notes had not been forwarded by that point. The doctor thought that it looked as though it had been removed, but could not offer much help at all apart from giving me some antibiotics (that ended up making me ill so I had to stop taking them). I was incredibly upset as the area began to heal and I realised that it looked as though I'd been butchered. I'm not sure whether I was being overdramatic, but the area looked a lot different and noone had prepared me for such an intimate part to be changed so significantly. 

I ended up making a complaint and was given an appointment with the head consultant of the hospital I was at. She was there with the surgeon who performed my operation (who was not allowed to talk for the whole meeting, even though she apologised profusely when I left the room which makes me suspicious). I was told that the area was healing normally and she basically dismissed by concerns that things looked different - even though I was in tears. I left that day feeling like I had not been listened to, but wasn't sure what else I could do. Eventually it healed enough to resume sex, and although the scar tissue took a lot longer to heal I hoped that it would be the end of it. Eventually the hard lump that was left after the surgery went down too and I really really hoped that I wouldn't have to go through anything else. However, almost exactly a year after (August 2015) I was booked in to have a cyst drained again in the same place. I made sure that I went to a different hospital, but was frightened that my experience would be the same. The surgeon informed me that it might just be a sort of fluid filled sack sat on top of the gland and that it would be a quick and easy procedure to drain it. I asked whether I could have the gland removed if it was a cyst/abscess again, but she said that they do not recommend it because it is invasive and can cause a lot of blood loss and quite often results in having to be taken back into surgery. Well, the thought of that put me off and I hoped this would sort it out. My aftercare was a lot better, but maybe because I was fully prepared this time. I healed quickly and barely needed any painkillers and was really thankful for it all being over. For a few months it was fine - the scar tissue was sore at times, but apart from that it didn't seem like the lump was returned. But after sex one day my heart sank as I realised a lump was forming. It was more like the fluid filled sack and I was able to drain it myself. I should note that I'm convinced this gland has never worked properly. After the first surgery healed and ever since then I have been able to drain it myself, but I have to use a cotton wool bud and sort of wrap it around it as I pull it out. It's thick and stringy, like jelly but worse. Sorry if this is too much information, but I'd be interested to see if anyone else has this problem. Anyway, most times after I had sex I tried to drain it myself to stop it filling up and getting blocked and this worked for a while, however, as time has gone on I have become more and more aware that it is not gettnig smaller - in fact it is getting larger and feels like there are two lumps. One is very close to the surface of the skin due to the scar tissue sticking to the gland - it resembles a blister of sorts and I can quite obviously see the liquid inside. The other lump feels more like the gland itself. Yesterday as the day went on I realised that the area was swelling up a lot and I knew that it was probably infected. I barely slept last night because of it and it is no better today. I will hopefully be able to see a doctor before Christmas, but I am dreading being told that I need more surgery even though I know it's the only way for it to go down again. 

I should say that although I managed to drain some of it myself over the years, they have never burst themselves which makes me feel like the gland never worked in the first place, or stopped working properly. The gland on the other side works completely normally which is why I've come to this conclusion.

I'm really unsure what to do now. Part of me thinks I should get the gland removed as I can't keep taking weeks off work to have it drained only for it to come back a few months/year later. 

The whole experience has left me feeling quite depressed and I do not want to have any sort of sexual contact anymore as when I get even the tiniest bit aroused then the lump swells and I have problems with it. I was a very sexual person before my first surgery and without having that closeness and being able to do it when I want to, I just feel like a piece of me is missing. Some days all I want to do is cry, and some days I do cry because it feels like this is how it's going to be forever now. 

I wonder whether maybe I should save up and go private if I were to have it removed, but right now there's no way I'd be able to afford it.

It helps knowing that other people are going through similar experiences, but I feel like it's not a well-known or well-understood thing and I've felt that hospitals in particular don't seem to care that much at all. 

One day I want children and I am scared that the scar tissue will rip if I give birth, especially if I end up having the gland completely removed. If I knew that having it removed would stop it from returning and not come with any complications I would jump at the chance, but after all that's happened I can't help thinking that something else will go wrong and I wont be able to come back from it. 

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  • Posted

    I guess it's time for an update. 

    It did get an infection just before Christmas and swelled up more than ever before. I've never been in such excruciating pain as I was at that point and could barely think straight. I was about to think about going to A&E when it burst out of nowhere. What a relief! I managed to drain it and went to the doctors to get some antibiotics. It healed after a week or so, but I was put off sex for months and months after that point because I was so very afraid of it coming back. 

    Since then I have still been draining it manually after sexual arousal, although at times I've been able to drain it completely and it's almost like it was never there apart from all the scars from operations. 

    However, yesterday I knew in my heart of hearts that it had another infection and I cried for so long because I was so scared that it would swell to the size it did before Christmas. I managed to get a doctors appointment today and she's given me antibiotics which will hopefully help. I've also begun to get my head around the very real possibility that I will need to have the gland removed. In the past the doctors and surgeons have scared me when they talk about it being intrusive and complicated and I am frightened by having it done - however, I know that I cannot go on like this as it's ruining my relationships and my confidence in myself. I start a course to become a trained counsellor in September so I can't realistically have it done until the summer holidays next year because I have no way of knowing how long it will take to recover from. 

    The whole thing is slowly destroying me from the inside out - every time I have to drain it manually or I have an infection my heart breaks a little more sad 

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  • Posted

    In the time since I last posted I've started taking Serrapeptase after reading about its benefits in the forums. It's helped me to drain it manually much more easily, but the problem remains. After my last operation to drain it a pocket has formed above the gland which fills when I become aroused. I then have to push this back into the gland to drain it properly. I shouldn't be having to sit in the bathroom and do this for half an hour plus every time I'm intimate, and quite often it makes me upset. It's completely destroying any enjoyment in sex that I've had because it hardly seems worth it for all the trouble it causes. 

    I have had another 2 infections close after each other, the second being one that I'm suffering from now. I've ended up being referred back to the gynaecologist to see what they say - I think the doctor was a bit shocked that I was having to drain it manually all the time. Truth is I know that they'll probably just suggest an excision of the whole gland and the thought of that still scares the absolute crap out of me. 

    I have a very supportive family and partner, but the truth is that unless you've been through this there's no way to fully understand how horrendous it is. I feel like I'm having to cope with this alone in so many ways.

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  • Posted

    Since I last posted I've had to fight to see another consultant after stating that I really felt that I needed another operation. My case was sent to the Independent Funding Panel and I had to prove that it was effecting my life enough as it's classed as cosmetic surgery! Having to plead with people that I'd never meet felt so wrong and a bit shameful, but luckily I've had a supportive GP who did all she could to help me. My funding has just been accepted which is bitter sweet as it probably means in the near future I'll be having much more serious surgery.

    In between all of that I've had what seems to be more infections in my gland. Although there isn't really any pain, heat or swelling it's filling up with a smelly, watery fluid. I've taken two sets of penicillin based antibiotics but they don't seem to make a difference so I'm seeing whether, given time, it calms by itself.

    I'm truly terrified of getting my gland excised and have no idea what my experience will be like. I can't help but fear it after my first operation, and it's going to be a hard thing to face when the time comes. I want my life and my body back though and don't want to have to constantly think about it. I really hope the end is in sight.

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