Suffering with recurrent periclitoral
Posted , 10 users are following.
Hi there,
I'm looking for any advice & sharing of similar experiences (ESPECIALLY if you suffer/have suffered with a cyst in the same area). Here's my situation:
In summer last year a noticed a pea shaped red bump beside my clitoris on the right-side of my labia minora. Over the course of a few days it grew to the size of a tangerine - was red, swollen and extremely painful. Doctor sent me straight to ER, they drained it under GA. A month later it recurred, they marsupirlized under GA.
It was diagnosed as a peri-clitoral cyst which I am told is very rare.
Then I had nothing (though a tiny unnoticable symptomless cyst remained under skin) for months until Christmas when it became inflamed/swollen/infected again. Amazingly I managed to stay out of hospital this time by being religious with sitz baths, using a homemade ointment of castor oil, tea tree and witch hazel and doing hot compresses.
A month later of course it returned again and despite keeping up these methods, it continued getting more swollen and very painful to the point where I had to return to hospital. They drained again, this time we me under local anaesthetic - which I don't recommend to anyone - the needle is very painful.
After the 4th recurrence my gynaecology clinic finally took the matter seriously and advised surgery for the excision of the cyst when it's not inflamed. They warned of potential tissue and nerve damage given the area it's in... but I didn't see any other option. From the two drainages and marsupilization I already have scar tissue anyway and am so tired of the disruption and pain, trauma etc.
So I'm booked in to the OR.. I wake up "post-surgery" and the surgeon says she couldn't find the cyst. She was confused because she had felt it herself two weeks previous, and I too had checked and felt it the night before. (Just to reiterate, when it's not infected, it's a tiny and visibly unnoticable little bump). But it had in fact disappeared & no surgery could be done because they didnt want to cut me open if they couldn't feel anything (which makes sense).
I was discharged & not given a follow up appointment or anything. This was about 3 weeks ago. On Tuesday night I felt a bruising feeling and of course, the cyst was starting to swell again. I'm sitting here now with it gradually getting more swollen & am also getting waves of fever (which I've experienced before with this - I guess it's the infection?). It's not unbearable though, just uncomfortable at the minute. Keeping up with the usual epsom salts sitz baths, my ointment, hot compresses...
I went to see the gyno who tried to do the surgery this morning. She gave me a Doctors note and told me to show it to the gynos in ER if it got to the point again where I needed to go to hospital for drainage/marsup. The note requests excision surgery under general anaesthetic. This concerned me because she had previously told me she would not under any circumstances perform the exicision if the cyst was swollen/infected, because the surface area is expanded and it's hard to tell the actual perimeter of the cyst meaning there are wider margins for damage.
What are my options here? Is there such a thing as a vaginal cyst specialist? How do I see one?! Finding doctors and gynaecologists I've experienced so far to be less than accommodating. I understand that the area the cyst exists in is rare and thus they are unsure how to proceed - but the element of 'care' has been less than desirable for this whole experience.
I'm in Canada by the way - Toronto specifically.
Thanks in advance ladies
0 likes, 11 replies
melissa69294 martha64205
Posted
ssalguud melissa69294
Posted
Like you, I'm pretty sure I've had this for a long time--though probably a lot longer than you. I've also gone to the doctor about it and gotten a lot of confused, disbelieving, and judgemental responses. Doctors have put me on antibiotics under the assumption that I have some new, undiscovered STD from a meteor that crashed onto Earth (I don't know where they thought it came from). Most have put me on things like nortriptyline and lidocaine and prescribed dildos of increasing size (no exaggeration this time) under the assumption that I have a psychological disorder. I've even been shamed by a few gynecologists for being unable to tolerate the pain of a physical exam. With the exception of the doctors who presumed I had a crazy STD, no one else ever presumed I had real pain until it got too big to blow off. Good grief. They never stop with the neurotic, hysterical, frigid woman diagnoses.
ssalguud martha64205
Posted
I just got recently diagnosed myself. On my clitoral hood. Super painful. Couldn't walk without lots of pain. Do you have any updates? I was sad to see that tea tree and coconut oil didn't work for you because others with Bartholin cysts seemed to find it helpful. Were you ever put on antibiotics for it? If so, did that help? The first doctor I went to assumed it was a bladder infection and gave me antibiotics that actually seemed to have helped a bit, but we stopped those when another doctor figured out what the actual problem was. These things seem to be super rare, so it's hard to find information online.
Bp76543 ssalguud
Posted
hi @ssalguud... im also dealing with this. how did yours resolve? it doesnt look like OP responded to your comment so im hoping you see this as i would really like to connect with someone else this is hapoening to or has happened to... i feel like im going crazy because none of the doctors seem to realize how painful it is.
ssalguud Bp76543
Posted
Unfortunately, it's been a really long time, so I can't remember precisely what the doctor did to clear it up. Fortunately, it didn't take a long time to heal--maybe a few weeks once they'd diagnosed it--and I did not need antibiotics. I remember having an appointment with a doctor who cut it out and cleaned it, and then I had to do daily (maybe 2x daily) epsom salt soaks. I THINK that was it! There's a tub they make specifically for soaking that area, but any clean bin you can sit in comfortably should do. I'm so sorry that I didn't think to update my comment immediately after getting it resolved. Are the doctors not offering you any treatment for it???
ssalguud
Posted
What I do know is that you want to take a hard look at any irritants that may be making their way down there. I had been doing herbal soaks that a friend recommended for dealing with menstrual pain and migraines. I'm certain that's what caused it. Is there potentially a harsh soap, talc, essential oil, or douche you are using that might be triggering these? Do you wax? Thank the lord mine did not come back. Mine was modest in size (maybe the size of a grape if I remember?) and they DEFINITELY didn't have to do general anaesthesia. Can you potentially see another doctor? If your doctors are making you suffer through 2 months of that thing, I don't trust them.
Bp76543 martha64205
Edited
hi martha, im praying you see this as im dealing with the same issue and cant seem to get any help or understanding from the doctors. i had this happen twice before, 4 yrs ago, both needing drainage under general anetheesia. they tried the local anesthesia and like you mentioned, the needle was so insanely painful… Worse than unmedicated labor or anything else ive experienced. its insane they even try that. how did yours resolve? im feeling so hopeless and depressed as ive been dealing with the current recurrence for about 2 months and cant seem to get the docs to take me seriosly.
elizabeth19346 Bp76543
Edited
I would love an update on this! What did doctors end up doing?
My story: Years ago these cysts started for me. Once they start, they don't stop and the frequency is different for everyone. When I lived in IA my doctor decided to remove the 'sack' causing the cyst. He did a successful surgery (2018). I had no problems until...COVID.
Lovely covid (2022) gets you in your pre-existing conditions & my front right cyst came back & became infected. Now, I live in the sticks of MT & saw a new doctor who basically questioned me in if I have an unknown STD (married 20 years with only one husband & he's only been with me). grrr
The antibiotics helped remove the infection but for the first time ever, I still feel the lump. This makes me think it will return & sooner than I ever want.
Help, I want an update from others! what's helped long term? What meds were given? What's causing this?
heather35892 martha64205
Posted
this is an old thread. is anyone still dealing with this? how was it resolved? I had this issue 4 years ago, went away after three months now it's back again. each time it's a vicious cycle of also bv and yeast infections. 8 have no stds, not utis.
amy34948 heather35892
Posted
hey! i know this is old but just found this thread and felt so relieved that somebody else is experiencing this craziness!! i have been dealing with a clitoral abscess on the left side of my clitoris for 2 years. been to 3 different gynecologist, urogynecologist and even wound care specialist, 3 drainages with multiple antibiotics and it keeps coming back!!!!!! when it's not infected it looks like a small round lump under. what is it!!!!! any help is appreciated!!
Mai57669 martha64205
Posted
Hey, I would love to hear back from anyone in the Toronto area if they managed to find a doctor who knew how to deal with this. I had this pop up for me 3 months ago and ended up in the ER, but neither the ER or the specialist they referred me to knew what it was or how to treat it.
Hoping there is a permanent treatment for this.