PGAD that turned into prolapse / nerve damage symptoms?

[violethill]

Hello everyone,

I developed PGAD after taking birth control for the second time after a year-long break. This was when I was 22, in 2008. I abstained from birth control for 6 years after that, and the PGAD symptoms diminished. I then took birth control again from 2014-2018. That time, the PGAD symptoms returned after I stopped birth control and worsened as I went on and off it during those 3.5-4 years. The severity of the PGAD increased, unfortunately, with symptoms beyond arousal...it was like a deep internal itch that crossed the threshold into pain. I am now 39 and have never taken birth control again, and the PGAD is virtually gone; however, I developed a new set of symptoms after going off birth control.

I started noticing some difficulty holding in bowel movements in 2018, shortly after the last time I took birth control. I also developed a sensation of tenesmus (feeling like you have to have a bowel movement when you don't), especially while running. This progressed into a feeling of pressure or bulging at the back of my vagina about 1.5 years later. It was bad enough a couple years after that (in 2022) that I went to a pelvic floor physiotherapist, who didn't examine me internally but suggested some exercises for a possible prolapse. I found that doing the stretches / muscle relaxation exercises seemed to reduce the pressure while running, but the Kegel exercises to strengthen my pelvic floor actually seemed to provoke some of the PGAD symptoms again: specifically, they created a sensation of congestion and pressure at the back of my vagina that was reminiscent of PGAD symptoms. So I stopped doing the Kegel exercises.

After a while, I wasn't sure how much the exercises were helping anymore and got lazy and stopped doing them. The prolapse sensation progressed to the point I feel somewhat convinced I *do* have a prolapse, because a few hours before I have a bowel movement (sorry if TMI) I feel stool pressing against my vaginal wall, to the point it feels like it's right *in* my vagina. I've increasingly resorted to eating more fibre to have a bowel movement as quickly as possible and get rid of the pressure, but that makes it even harder to hold in bowel movements. One moment I feel pressure in my vagina yet am not able to have a bowel movement; the next moment, I suddenly have a sense of urgency and if I don't clench my muscles tightly, the bowel movement will just slide right out. Oddly, I still have a sense I haven't fully emptied my rectum after I have a bowel movement.

Additionally, even though I don't have the PGAD much anymore, I appear to have lost a lot of (sexual) sensation in my vagina. I have a little bit of sensation at the back of my vagina, but virtually nothing else anywhere else.

I'm pretty sure my estrogen levels are declining and I'm going into perimenopause (my doctor told me I likely was, and my mom went into menopause at 44), and a little research informed me that the connective tissue of the vaginal walls weakens as estrogen levels decline, which may explain why my symptoms are getting worse.

The doctor referred me to a pelvic floor therapist again, but I have so many issues (not just the prolapse but the loss of sexual sensation except in strange places, and inability to hold in bowel movements). I'm pretty sure these are all secondary effects of the PGAD, which I've never told anyone about. I'm wondering what to tell a pelvic floor physiotherapist, or if a physiotherapist is really the first person I should be seeing? I don't expect a physiotherapist to understand PGAD.

[29Mari]

Hello
It sounds like you have a rectocele, which is a type of pelvic organ prolapse. I had one for a very long time and finally had surgery to repair it, as well as an enterocele, and a prolapsed uterus. The surgery was done via the vagina. I got to keep my uterus.
My prolapse symptoms started when I was in my early 40s and were similar to how you describe. I was 54 by the time I got a proper diagnosis for it and was referred for surgery. It's been a process but I have mostly normal BMs now and I am very glad I had the surgery. I still have to eat a lot fiber.

The right doctor to see for pelvic organ prolapse would be a urogynecologist or gynecologist who specializes in pelvic reconstruction surgery. Find the very best, even if you have to travel, and you will have much much better results! This is so important! You want a surgeon who does prolapse repair surgeries all day long several days a week, NOT one who spends most of his/her time delivering babies or performing hysterectomies.

There is a lady who has a website called The Vagina Coach and a blog where she chronicles her own rectocele experience, her surgery, and her recovery, week by week. I highly recommend taking a look at it:
https://www.vaginacoach.com/blog/my-dec ... ele-repair

I've also had quite severe PGAD since 2009. My PGAD symptoms were not worsened by my prolapse repair surgery but it didn't improve the PGAD either.

Pelvic floor therapy that includes strengthening exercises (Kegels and core work) aggravates my PGAD. But I do think those exercises helped prepare me for the prolapse repair surgery. I started vaginal estradiol hormone replacement therapy (comes in a cream or tablet that you insert with an applicator) a few months prior to the surgery to help strengthen those tissues, and will continue with it for life. I was already in menopause by this time but it may be recommended for you to start on something like that now.

As far as the PGAD, I am currently seeing a different type of pelvic floor therapist who is using deep dry needling of the pelvic floor muscles, perineum, sacrum, and lumbar regions to help calm my arousal and pain symptoms. It is helping so much! I can't believe it!
You can read a bit about where I am in my PGAD journey here: viewtopic.php?t=11766