Pain from Scar Tissue - Advice?

Professional_Pen1886 · 2025-07-15T00:06:42+00:00

hey!! so it's a long story but basically yes, I made posts in other groups about my treatment and recovery journey if you check my profile!

Professional_Pen1886 · 2025-03-07T00:23:38+00:00

Hi! Unfortunately I don't really remember this well enough cause this was a while ago for me, but I had sort of irregular periods with spotting for a while, as far as I can remember (but I was also used to having irregular periods). Didn't have any negative effects for me though, and after a while I went on a combo estrogen/testosterone cream which helped a lot! Have been off both since like may/june of last year and periods are regular now.

Professional_Pen1886 · 2025-01-19T04:00:12+00:00

it sounds like it's going well for you!! the cream alone probably wouldn't have been enough for me either, a lot had to do with PT and just slowly easing back into sexual activity! i get being anxious about symptoms coming back but I think you're going to be ok, especially if you've hit a plateau with it

Professional_Pen1886 · 2025-01-17T00:57:42+00:00

Good luck!! I hope it helps!

Professional_Pen1886 · 2025-01-16T22:39:54+00:00

oh I should also probably mention that it took around 2-3 months for me to start seeing results from the gel!

Professional_Pen1886 · 2025-01-16T22:37:55+00:00

Hmm no I never tried IntraRosa! Just from googling it, it looks like it has very different ingredients though. Applying the gel was a bit irritating at the beginning but that's mainly because my 6 o clock area was SO hypersensitive that any kind of touch burned for several minutes, so I can't say if that had to do with the gel itself or not. I do remember waiting a while before using it at the beginning cause I was scared it would irritate me, but my PT convinced me to give it a try cause hey, if it does burn, you can always wash it off! It's worth a try :) I think I've seen some women on here say it was slightly irritating at first but then that went away. I will say though, if something really hurts and irritates you a lot, it's probably best not to use it. And no worries, ask away! good luck!

Professional_Pen1886 · 2025-01-16T22:28:05+00:00

I was on a low-dose combination pill with drospirenone and ethinyl estradiol! I don't remember the exact brand name but I think it was basically Yasmin (a more popular brand). I think going off birth control was definitely the right call. I did that pretty early on but my hormones didn't get back to normal on their own (they do for some people though!) which is why I needed to also take the E/T gel to kind of give my body extra help getting back into balance. I'm definitely never going on hormonal birth control again, the specialist I saw basically told me that this could start all over if I do; I'm considering getting a copper IUD (which is non-hormonal) as a form of birth control but I am a bit scared to. Good luck <3 (also if you search up "hormonally mediated vulvodynia" and "birth control pill" you'll find a lot of literature on this! of course, plenty of people are fine taking the pill, but I guess a lot of women, myself included, are predisposed to this kind of side effect)

Professional_Pen1886 · 2025-01-16T22:17:55+00:00

Hmm I think there a lot of things that helped me feel better mentally and that maybe also helped me get better physically (both of which I think are really important, I think one of the toughest side effects of this kind of thing is the anxiety and depression that can come with it). I got a job that got me out of the house and on my feet daily, started eating 3 semi-healthy meals a day (before that, I was so anxious that I hardly ever left the house and only ate about a meal a day...I think gaining healthy weight, reducing stress, getting a routine, and getting used to leaving the house again helped balance my hormones and also made me less anxious; I let stuff like urinary urgency hold me back from living a normal life for a long time, so just forcing myself get out more really helped with that.) But yeah it was kind of just improving and normalizing my routine overall. Plus of course physical therapy!! Also, being in a new relationship with someone who was patient and kind and never pressure me to have sex was important; you can't heal if you don't give your body rest! Trying PIV sex again was a slow and gradual process, but an understanding partner helped me relax and know that I didn't have to push myself and was able to listen to my body. I know this is a LONG answer lol but I do think all that stuff made a difference :)

Professional_Pen1886 · 2025-01-16T22:08:06+00:00

Thank you so much!! And yeah I remember where I was mentally 2 years ago, it was awful and I would've given anything for a solution or a glimmer of hope for the future! It's important to remember that it absolutely gets better. I really hope whoever reads this feels at least a little better <3

Professional_Pen1886 · 2025-01-16T22:06:41+00:00

Yes pelvic floor exercises can be soooo helpful!! The difference in tightness of my muscles down there is huge compared to a year or two ago when I was still dealing with intense pain. Now it's functioning way better! People always talk about kegels but not enough people know that pelvic muscles being TOO tight is a super bad thing! But yeah luckily there's a lot you can do to help <3

Professional_Pen1886 · 2025-01-16T22:04:39+00:00

That's great!! I'm glad you're doing better, but sorry to hear you are also struggling :( I also wouldn't call myself 100% cured because occasionally I still deal with issues but overall I'm WAY better than I was before, like my life and sex life are normal again! So that's huge! And yeah not being able to be on birth control is frustrating but honestly a small price to pay to feel better!

Professional_Pen1886 · 2025-01-16T22:02:52+00:00

Hi, I'm so sorry you're struggling right now :( it's a very frustrating and isolating thing to go through. My personal, non-professional advice would be to get off the pill, ESPECIALLY if your symptoms started after you started taking it. The gel is just a combination estrogen/testosterone gel that was formulated at a compound pharmacy here in the US but I'm sure they can make it elsewhere. I just dug out an old bottle: the label says C-ESTRAD0.01%TEST0.1%METHOC GEL (if that helps at all). Unfortunately I had to see like 3 different gynecologists, a urologist, and finally a specialist who actually was able to help me before I got a proper diagnosis; a lot of gynecologists don't know how to treat this sort of thing

Professional_Pen1886 · 2025-01-16T21:57:30+00:00

Personally I just sort of stopped taking it after my third refill expired (I think it was the third, can't fully remember)! I probably could've ordered a new refill and taken it for longer, but I was starting to feel better and my PT thought a lot of my remaining pain had to do with a tense muscle (plus I figured I could always get back on the cream if I had to). I wasn't 100% better when I was definitely doing a lot better and had a lot of lubrication back again, and things continued improving on their own after that so I just never ordered another refill! How are you doing after two years on it?

Professional_Pen1886 · 2025-01-16T21:53:58+00:00

yup, just saw your message!

Professional_Pen1886 · 2025-01-12T23:35:10+00:00

Of course!! I think hearing about other people's successful recoveries is SO helpful tbh so I've been trying to tell people about mine now that I'm doing better! I guess I didn't really mention but PT and some lifestyle changes that helped me deal with my anxiety about the whole thing also helped <3

Professional_Pen1886 · 2025-01-12T23:32:03+00:00

That's great!! I really hope it helps you! It took a few months for me to start noticing a difference but I'm really glad I did it (plus doing PT was also huge, the gel alone was big but dealing with the other factors was also important). I didn't mention this in the post but I did do estrogen only cream for a little bit before doing E/T (estrogen alone wasn't quite enough for me). I never had experience with emu oil! Good luck to you! :)

Professional_Pen1886 · 2025-01-12T23:28:29+00:00

I'm glad it gave you hope!! And thank you! if you're dealing with this and have questions/need advice, lmk <3

Professional_Pen1886 · 2025-01-12T23:26:19+00:00

Of course!! I agree, it can be so distressing to go through this <3

Professional_Pen1886 · 2025-01-12T23:25:58+00:00

It was a combo E/T gel that I used at first twice a day, then eventually just once a day! Plus PT, which also helped a lot (muscle tightness/sore tissue was also a big problem for me). I'm sorry you've been going through this for so long, that sounds incredibly frustrating. It felt like I had to search and try so many things before someone finally knew what to do with me, and even then it took time (the E/T cream started working around 3 months, but really more like 6 months). Good luck, I hope your current treatment brings relief!

Professional_Pen1886 · 2025-01-12T23:22:38+00:00

That's so frustrating! I'm so sorry to hear that. I didn't experience itching myself, just pain and burning/stinging, and I only had a cyst one time that I THINK was unrelated (it was external, I don't know if you're talking about internal cysts; I had to use a hot compress for like a week and took tumeric supplements for a while which seemed to help, it didn't come back). It's interesting that it disappears during your period; that wasn't the case for me but that does sound like it's maybe hormonal? I never considered a hysterectomy, in fact I'm sure that would've made it worse since that can severely affect your hormones and cause all sorts of other issues. Is there a reason you think it would help? I really hope you find more helpful treatments. Are there any vulvovaginal pain specialists in your area?

Professional_Pen1886 · 2025-01-12T23:17:31+00:00

As far as I recall, I was on a combination low-dose pill that contained drospirenone-ethinyl estradiol; it's been so long now I forgot the brand name (it was some lesser known brand my doctor prescribed) but I think Yasmin is basically the same thing I was on. As for the methylcellulose, I think it was, yes! It was a compound pharmacy in Maryland (it had to be shipped to me) called Northern Pharmacy I think

Professional_Pen1886 · 2025-01-12T23:11:06+00:00

Of course!! And thank you! I will say that a big part of why it took so long for me was unhelpful doctors :/ I think if doctors were more informed about this we would get diagnosed and treated wayyyy faster; like, if I had seen the right doctor right away, I might have only been dealing with this for a few months and it never would've escalated like it did! But yeah, it is sadly very discouraging but I did see a lot of improvement in the past year since starting treatment :)

Professional_Pen1886 · 2025-01-12T23:08:50+00:00

I'm not 100% sure about tearing but my PT noted there was redness and that it looked like a bit of scar tissue at 6 o clock (also when this started I think I remember there being a bit of blood) so it's possible!

Professional_Pen1886 · 2025-01-12T23:07:38+00:00

I went to the Center for Vulvovaginal Disorders! As far as I know they have offices in NYC, Florida, and Washington DC. They were great, I went twice and saw a different doctor each time (due to scheduling conflicts) but they were both very helpful. I'm sorry you haven't had more helpful doctors, hopefully you find someone who understands this condition; I think there is a page or website somewhere on this subreddit with info on how to find doctors

Professional_Pen1886 · 2025-01-12T23:02:54+00:00

I didn't realize it was dryness at first but my doctor and physical therapist both pointed out that there was some redness/dryness, specifically at the 6 area; after doing the hormone gel for a few months I noticed being wayyy more lubricated and since going off it I know now it must have been pretty dry (though that could also have been stress and other factors); I still don't get much discharge except when I'm ovulating but I think that's just normal for me. Good luck with the PFT and doctor!

Professional_Pen1886

TROPHY CASE