Vestibulitis = Painful Sex (TMI)

[~Kim~]

Oh Amy :hugs: I could have written your post myself. I have never been investigated for endo and didn't even know they were related but my husband and I both understand your heartache.
I have had both conditions for years and years. Diagnosed after multiple bouts of UTIs.
I have tried the kenacombe, the lignocaine (designed for use in penile surgery so safe) - but that's only useful if it is applied some thirty minutes prior and that kind of takes all the spontanaeity away IYKWIM?, low dose tricyclic anti-depressants, low citric acid diets, etc etc.
Nothing has really worked like Hoobley said except really trying to relax, but the brain is a very powerful being and can often override all conscious effort.
Having my babies has been an absolute nightmare. Finding a doctor that actually undertands is even worse.
Recently with being hospitalised I found one that does. He wants to see me to sort out something to help after this baby is born, so I'll be watching this carefully.
Sadly the fact that I'm not allowed to DTD until this baby is born is actually a relief for me....at least there's no anxiety that goes with it.
Not much help but you have my empathy and understanding.

[Aimz]

Wow Kim - it certainly is a comfort to know there are people out there who share this condition. It's not something I feel comfortable discussing with my friends or even (to a certain extent) my Mum. Thankfully I have BB and people like you .

I'm interested to hear what the low citric acid diet does and how it helps. I also curious as to how the condition affects childbirth and the severity of what already is a painful process.

I think my doctor is on the right track with this - it's hard because I have seen one GYN for Vestibulitis and one for Endometriosis and now I have to try and bring the two conditions together and hopefully he will look at this seriously in terms of a management plan. I don't know how much longer I can take this - although I have been putting up with it for four and a half years.

What has your doctor said to you about management post-natal?

[paradise lost]

Wow Kim - it certainly is a comfort to know there are people out there who share this condition. It's not something I feel comfortable discussing with my friends or even (to a certain extent) my Mum. Thankfully I have BB and people like you .

I'm interested to hear what the low citric acid diet does and how it helps. I also curious as to how the condition affects childbirth and the severity of what already is a painful process.

I think my doctor is on the right track with this - it's hard because I have seen one GYN for Vestibulitis and one for Endometriosis and now I have to try and bring the two conditions together and hopefully he will look at this seriously in terms of a management plan. I don't know how much longer I can take this - although I have been putting up with it for four and a half years.

What has your doctor said to you about management post-natal?

Re: childbirth - i was not with DP and had not fully managed to rid myself by will of the vaginismus when i had DD (still sometimes suffered it with XP and only DTD about 4 times during my PG) but i had no problems (sustained a small 1st degree tear which one midwife said she'd stitch and the other said she wouldn't so i chose to not bother - i didn't feel it at the time and it healed no problem) giving birth and if anything the process seemed to "cure" me to a large extent, perhaps because i now internally associate my vagina with something so incredibly positive (i had a great birth), i don't know.

HTH

Bx

[Meegs]

Amy, firstly my heart goes out to you.. What a terrible hand you have been dealt to have two issues to deal with. I have not experienced this situation at all.. but did have issues with DTD in the past, I ended up seeing a clinical hypnotherapist who helped me out immensley. I understand that your problem is largely clinical but hypnotherapy may help you relax and make it all just a little easier??

Good Luck!!

Meegs

[Footsteps]

hi amy,
thanks huni...im just trying to deal with it one day at a time...i'l be ok and thank for the support. your question is quite right my conclusion is give up trying to understand whats happening with my body...everybody seems to put most of my pain down to the adhesions...i don't know..i pray a cure is found.
love rach xxx

[~Kim~]

Sorry, baby brain. It was a low oxalate diet with calcium citrate supplements.

It wasn't the labour/childbirth that was worse it was the internal exams that went with it.

Just do a google search for vesitbulitis diet.

[Aimz]

I just looked up that diet and there are a few big no-no's on there that I consume on a daily basis. Thanks for the pointer Kim - HUGELY appreciated.

[Muffy]

hi amysarah!
i havnt been able to get on here for a while but i have been wondering how you have been going!!
im glad to hear that you finally got the answers you were looking for!! but lots of hugs for the ongoing problem! i dont have any advice but i hope you get your 'life' back to normal asap!! xx

[Smoke Jaguar]

Was reading through the thread and then someone got in before me! Hypnotherapy is great. It's a matter of choosing someone who has dealt with sex issues before. There are lots of modalities and I can recommend Emotional Freedom Technique, TimeLine Therapy and Journey therapists. You'll discover other things that you hadn't given the time of day and when you do, you'll feel released, and 'able'
FWIW, I had a friend who had endo, endured very painful sex with her very sexy husband and in the end stopped having sex at all with him. The burden she carried from the associated guilt, on top of her issues that were linked to it, meant she engaged in marriage-sabotaging behaviour and called it a day. I have no idea where she's at now, she also let me go during this time and I hope she's found some peace.
You're not going to pull the pin on your marriage, I'm saying that it's really worth looking at all the angles, bravely, because when you unlock one thing, you'll feel more positive about something and hopefully it will cascade What have you got to lose? Except some sleep, if it's for the right reasons

[Aimz]

That's interesting Maya - although I'm not sure if my town has anything like those therapists. It is a large regional town and there are a lot of psychologists but I'm not sure what they specialise in. How can I find out? I will ask my GYN if he can recommend anyone for me.

I've felt really on edge today - really guilty, some shame (can't really pinpoint it), anger, frustration and envy at all of those enjoying sex. It just doesn't seem fair that I am being dealt blow after blow. I am so over dealing with this and constantly searching for an answer. I know I am one step close than I ever have been - but the waiting is agony.

[Footsteps]

amy,
you have got nothing to feel ashamed of...to me this seems to be common in people with endo...just its another taboo...not talked about so people suffer in silence..thats wrong...im with you on the frustration.
gtg
love rach xxx

[Smoke Jaguar]

Google 'natural therapies directory' - I find all sorts of practitioners in my area this way It's a pretty comprehensive directory for hundreds of health modalities and you punch in your postcode or town (can't remember which). Then it's a matter of giving them a call and asking them about what they do and getting a feel for them.
I agree - in our male oriented world, sex is paramount and when it can't be delivered it's considered 'deviant' and abnormal, instead of accommodating and encouraging other forms of intimacy whilst the problem is worked through. How many doctors give you a label for what you have and then say, "so, it's really important you work on other aspects of intimacy for your wellbeing and the wellbeing of the relationship, here are some recommendations for people to see..."? Nuh! Same when you have a baby, go for your check ups and say you're not sure about having sex just yet, or you are too tired from caregiving to provide sexual intercourse and they say "oh, there's no medical impediment, it's important for your relationship to get sex back on track and here's what you can do to get back into it for your partner asap". For some reason, whilst they're looking at your bits, they forget they're attached to a real person, cos that person is a woman and what kind of woman doesn't want to have, or experiences pain during sex? I mean, of course you'd like to do it again, it feels nice when it's working right - as if you didn't already miss it!
Sorry, I'm ranting. I am not saying it's a conspiracy, it's just that women's sexual wellbeing seems like such an afterthought, lately. So, I'm questioning assumptions, again!
Like I said, my former GF received so little support for her condition that she beat herself up for it and sabotaged her own marriage (among other reasons, but this was a big player - lap was supposed to 'cure' her, too).
Anyway, *getting off soapbox now

[mama]

I feel so relieved to have found so many posts I could have written myself..

I have vaginismus from a traumatic childhood and rape later in life which rears its ugly head whenever anyone looks like they are going to try to touch me. I have tried a lot of relaxation exercises and I'm married and love my hubby very much but still it causes a lot of problems and sometimes I find myself arguing with him so I don't have to put myself through sex.

A few months ago I was also diagnosed with vulvodynia where the skin on the outside is red and raw and painful and feels like fire when I am sitting for long periods wearing tight jeans.

Last week I was diagnosed also with Vestibulitis which means the skin is inflamed inside as well. I thought it was a bit odd when I last had my pap smear that although it was really painful to have the speculum put in (and it almost didn't eventuate), I just about flew off the end of the table when I was poked with a swab tip.

The gyno I saw last week told me I wasn't to wash with anything - even soap alternatives, and to wash myself with salt water (2 teaspoons to 1 litre) 3 times a day. The thing that I found incredilous was that he told me not to use any chemicals including lubricant and instead to use vegetable oil??!! He said it shouldn't irritate as its ingestible but I don't think it applies to all forms of contraception (eg. condoms). Then he told me after an exam that he'd rather I didn't have sex and learn pleasure in other ways which I took as - "you need to figure out how to service your husband some other way". Which annoyed me. He diagnosed me with something but the sex life is still my problem!!

I also had a heap of adhesions removed a couple of years ago from the outside of my uterus through lap surgery. I wondered though whether they would come back as i had surgery to remove them when I thought surgery causes them?

And I spoke to my gyno the other day also as I have been having severe stomach cramps from an irritable uterus, I will also have to have a hysterectomy in the near future. Which i really don't want. He said maybe I could try the marina IUD but I am very wary of something foreign being in there and horrified of the thought of having it put in when I have 3 different V conditions - it sounds like it would cause a lot of pain!

Why aren't things ever easy!!

[Aimz]

Mama thank you so much for sharing your story. It's comforting to know I'm not the only one out there

Then he told me after an exam that he'd rather I didn't have sex and learn pleasure in other ways which I took as - "you need to figure out how to service your husband some other way". Which annoyed me. He diagnosed me with something but the sex life is still my problem!!

I am still yet to see my gyno after my November lap. I have been avoiding that appointment like the plague because I am so afraid this is what he's going to tell me and that it can't be helped. I'm using the "head in sand" approach about the whole thing and trying to ignore it. But seeing this thread again has made me realise I can't avoid it forever - I really do need to go and see him.

Good luck on your journey Mama and welcome to BB

[mama]

Thanks amysarah... definately go see the gyno.. you have nothing to lose by hearing what they have to say.. and like me you can leave and decide whether thats an option for you or not..

Good luck and let us know how you go...

I'm still looking for some miraculous cure...

[Mrs H]

I have been diagnosed with vestibulitis and spent my wedding night NOT HAVING SEX! I have handled this really well for the last 3 years but only in the last month I am starting to lose the plot!. My gyno has now said he has done all he can do and has refered me to a pain management specialist. I just want to make love to my man as husband and wife. We would like to have children in the next few years but that seems so far away at the moment. I just want to say how glad I am to have found this site and hear the stories of all you guys. Although I would not wish this upon anyone it's good to know I'm not alone. I haven't told anyone of my condition because I am not only embarrassed but also ashamed that my man will be embarrassed too. He assure me he would never feel that way but your head tells you funny things I guess.

My heart goes out to all those women suffering this piece of crap condition (as you can see I'm in my angry stage tonight) and I hope that relief is in sight FOR ALL OF US!!