Part 1: Why I had to do this

I have a specific kind of vulvodynia called congenital neuroproliferative vestibulodynia. This is often referred to as "provoked vulvodynia," but that term is misleading, since the pain can become unprovoked (i.e., it happens all the time and not just with touch) if it gets bad enough.

The earliest symptoms that I had, which I have had my entire life, were pain when touching anywhere in the vestibule, as well as pain when touching the navel (this is a specific thing about congenital neuroproliferative vestibulodynia because the navel and vestibule apparently come from similar embryonic tissue. although I have not bothered to find a citation of this). The pain feels superficial, but it caused pelvic floor hypertension making it extraordinarily painful to insert anything, as well as sometimes causing peri-urethral pain (which felt like urinary urgency) if I wiped too hard.

Failed non-surgical treatments

At some point, after I had been on T for about 4 years, the pain went from occasional provoked pain to constant pain. I was treated for atrophy but that didn't actually reduce the pain any. Topical lidocaine didn't help very much because most topical bases cause serious irritation. (I have no idea if this is a typical vestibulodynia symptom.)

Another, more minor, symptom was pain at a 6-7 when touching the glans. This was only a problem for me when masturbating and I got used to it but was not happy about it.

I was able to reduce some of the pelvic floor hypertonicity with pelvic floor PT, but my PT figured that I wasn't going to be able to reduce it any more without fixing the root cause of the pain, since continued pain would cause continued muscle tension.

The only non-surgical treatment that significantly helped was pregabalin. It was also very helpful for my mood disorder, but now I'm chemically dependent on it. I have successfully weaned myself from the max daily dose (450 mg/day—150 mg 3x/day) to a slightly lower dose (300 mg/day—150 mg 2x/day) but have not tried to taper down from that yet. I went from 450 mg/day to 0 for a couple weeks due to a prescription error. I am in the US where it's a Schedule V substance so there is absolutely no lenience for that. Pregabalin withdrawal causes an extremely agitated and anxious state. It reminds me of opioid withdrawal without the GI symptoms. It also resembles what I've read about benzo withdrawal, but I haven't experienced that myself. Unlike benzo withdrawal, it will not kill you, but *you might feel like you're dying the entire time.* **Talk to your doctor about the risks of chemical dependence before starting pregabalin or gabapentin.**

Part 2: partial vestibulectomy

At this point, my doctors and PT agreed that the next move was a vestibulectomy. This was in the 2010s so the only option available was a partial vestibulectomy. If your dick and urethra are at 12 o'clock, the partial vestibulectomy removes tissue from about 10 or 11 o'clock to 1 or 2 o'clock. It uses a (front hole) advancement flap to replace what used to be vestibule, which is why it can't get the peri-urethral area.

The recovery was brutal. I spent at least 6 weeks on oxycodone. 8 weeks before being able to return to only limited, part-time WFH. Part of this was because the extreme pain when sitting, and part of it was because the remaining peri-urethral pain and urinary urgency. To anyone with vestibulodynia reading this: **I strongly recommend that you do not get *just* a partial posterior vestibulectomy if you have severe peri-urethral pain.** I still had significant lingering pain at about a 5/10 level for the following year.

I got back surgery (L4-L5 and L5-S1 microdiscectomy) to help with sciatica, and was told it would possibly help with the pain at the anterior vestibule as well, and in addition to getting rid of the sciatica, it actually did. The following few years I was at a 3/10 pain most of the time.

Part 3 (ongoing): anterior vestibulectomy with buccal graft

Whatever. I managed. Went on to live my life. Still sucked to have the pain though, so when my surgeon offered the opportunity to finish the vestibulectomy with an anterior buccal graft I decided I definitely would.

What I can tell so far is that the new graft area does not have neuropathic pain, just the normal pain from touching a tender, sore surgical site. It has also helped with oversensitivity at the head of my dick, which was apparently caused by crosstalk between nerves in the area.

This part of the story isn't done yet, because I'm still recovering from surgery, but I plan to post about it when I'm several months out.

I’m nervous. I got the e cream from the dr that gave me my testosterone. Prescribed 1 gram daily for two weeks. I’ve finished the two weeks but the pain has come back, I’m worried about now doing the twice a week regimen i was told to do incase it gets worse.

I would message my doctor but they are very busy, and i was prescribed the cream two minths ago and only just finished the two weeks. I don’t want them to think i don’t care about my health but it took time to get used to the applicator. The pain was a good motivator eventually.

Has anyone else dealt with this? What should i do? Keep doing it daily, or go ahead and try the twice a week?

Hey folks! I hope you're all doing well. So I was absent for a long time due to increasingly bad pain and dysphoria. Due to where I live, HRT is legal but the people who prescribe it don't explain how to use T correctly (They told me I could inject up to 200mg/ml no matter what...they don't even know how T conversion works). So if you want to do it right, you need to dose yourself and understand your blood work.

So I told them I was still experiencing terrible PMOS cramping, PMDD mood swings and endometrial pain after 1y4m on T. They almost wanted to take me off of my T because they "assumed" it would help with the symptoms. I vehemently disagreed and left. So I did some reading. I'm on a high dose (150mg/ml 1ml IM per week) and I switched it to six day cycles.

My friends, the difference it makes. I went from having constant pain of some sort to 10% of pain a day, and I've only been doing this for a month. I tested my levels too - nothing higher than it should be!

So I'm not saying you should try to strive for six day cycles instead of six, but it's helped me immensely! (Just remember to set your calendar weekly or you'll forget/inject early)

This is purely anecdotal, but I suspect it has less to do with "6 days vs 7 days" and more to do with avoiding the trough at the end of the injection cycle.

Some of us with PMOS, PMDD, endo, or generally low SHBG seem to be quite sensitive to hormone fluctuations. Testosterone levels gradually fall throughout the week, and for some people symptoms like cramping, pelvic pain, breakthrough bleeding, mood changes, water retention, or PMDD-type symptoms seem to show up right before the next shot.

Moving the injection to every 6 days means you spend less time at the lowest point of the cycle, so hormone levels stay more stable. It's the same reason some people feel better on twice-weekly injections rather than weekly ones!

There's not much research specifically comparing 6-day and 7-day schedules, but the idea that reducing hormone fluctuations can reduce symptoms is biologically plausible. In my experience, it feels more like preventing a hormonal dip than increasing the dose itself.

PS: If anyone has any suggestions on making our sub more well-known, please do comment or send a suggestion via modmail! I am BIPOC and I know many BIPOC people are shunned from spaces like this, so please do encourage them as well (although I will do what I can from my side to contact other subs).

I struggle with UTIs for a long time even before I started T and have to take loads of antibiotics for it.

(Please don't give any advice about that, I can assure you I have heard it all.)

The thing is, before Testo I used a mild soap at the outer labia with lactic acid and also lactobacteria down there to conter the antibiotics a bit.

Since testo, it feels wrong and not as if that should be there... So what bacteria are supposed to grow there?

I'm interested in thoughts, guesses, research papers, anything :D

had surgery 8 hours ago. i feel like shit but it’s about what i expected. i’m just glad i have answers i thought i was crazy

Hiya! UK based (enby 24) I had a cervical smear booked a few days ago and they used the smallest speculum possible but still couldn't get it in and open without causing too much pain. Part of the issue is that I have fibromyalgia caused by covid so I'm going to be more tense than the average person anyway, but it would be a lie to say that gender is probably not part of it.

I have bought co-codamol and I have an appointment to see if I can get muscle relaxants before trying again. I'm going to try again with my GP and then if I can't get that to work I will go to a clinic that my mental health person recommended.

Do any of you have advice for what has worked for you? Any advice on talking to the GP to get muscle relaxants?