Vestibulitis = Painful Sex (TMI)

[Aimz]

When is the painful sex going to end???

I just went through invasive surgery in order to solve this issue. It took weeks to recover but I thought everything would be better because the doctor found endometriosis and removed it. I've been taking it easy since the surgery and this morning DH and decided it was time to get back into the groove again. But it wouldn't go in. It hurt SO SO much.

I've had two issues with pain - the first was the "deep" pain and the cramps after DTD which should be gone now that the endo has been removed. The second is "entry" pain which is where the glands and surrounds (perineum etc) are extremely sensitive. I thought the endometriosis removal meant that ALL the pain would go away (GYN mentioned something about some nerves being affected by the endo).

Turns out the endo has nothing to do with the entry pain. It has a whole different name - "Vestibulitis". I was diagnosed with this by my previous GYN who prescribed a cream called Kenacomb and directed me to take DiFlucan once a week for three months. I tried the Kenacomb which seemed to help a bit but stopped the DiFlucan after two weeks because it was $20 a pop and we couldn't afford it. DTD was still painful and I eventually went and saw another GYN who said I most likely had endo and he would do a lap. When he told me that I thought this other GYN was full of crap with her creams and thrush treatments and gave up on using them.

Now I've realised that they are two completely separate issues and require two completely separate treatments. I was so stupid to think that the lap was going to fix everything. My DH got so excited that we finally had a real answer and a real solution and in the end it hasn't fixed the main problem - because he can't even get it in!! I am seeing my GYN again on 5th January so I will have to bring this up again with him. Why didn't he tell me they were two completely different issues?

I am just SO sick of this. Why me? Why can't I just be normal and enjoy sex with my gorgeous husband? I am frustrated beyond belief at the realisation that this has been going on for four and a half years.

Did you know that a married couple who has sex less than 15 times per year is considered to be in a "sexless marriage". That term just makes me so so sad because that's us.

[Lulu]

Oh hun, at least its not a loveless marriage.

I hope you get some answers too, and soon xoxoxoxo

[Cassius2]

oh sweetie! that is the pits!

did your gyn check that there was no endo outside of the uterus (like on the cervix)? that was my first clue that something was amiss as i would have intense searing pain after DTD just because it was being irritated by DH (sorry if TMI guys! LOL!). my other clue was that sometimes there would be tiny barely perceptible traces of blood...

just a thought...

[rhyb]

Awww amy big hugs babe! I agree with Lulu better a 'sexless' marriage then a loveless one. You are very lucky to have a DH that understands and supports you through these difficult times. ing that you get an answer soon.

[missya]

HIya, I understand completely my endo did that to me too.
Did they find any in your vagina, because that was what was causing my pain?
How long since your lap?
I know even once I was healed from the surgery it was difficult to get excited enough for sex to be comfortable as I was always expecting the pain so I couldn't relax. I had at least 2 years of it prior to my diagnoses, truth be told I sometimes still have a mental block with it 12 years after surgery.
I hope things improve with time and patience, I know how depressing it is and for me it tainted all parts of my relationship but don't give up!!
Cheers Missy

[Hollybolly]

Sweetheart xxxx

In the meantime before you see your GYN again, I would make an appointment to see a naturopath/and or chinese herbalist.

I was having acupuncture for pain all over the place (including during sex) because of the endo - there are certain treatments & chinese herbs that can help... they certainly helped me

Chinese herbs are also a little more friendly on the wallet as well

Give it a go sweetie.... and I also agree with Lu - at least its not a loveless marriage... focus on that while you wait for some answers hunny xxxxxxxxxxxxxxxxxxxxx

[Aimz]

Lulu & Rhyb - you are right - DH really is amazing and puts up with so much. He never complains or vents his frustration - he is 100% understanding of this whole thing. It certainly isn't a loveless marriage.

Cassius - During the lap he checked everywhere and found endo towards the back near my bowel - sitting on some nerves which was causing the pain after sex (cramping and spasms). I also had mild bleeding after DTD too. That explains the "deep" pain he was talking about. But that was only when DH could actually get it in there. The entry pain is far worse than the deep pain.

Missy - I'm not sure if they found any in my vagina. They did a laparoscopy to check the outside of my uturus/tubes/ovaries/bowel/bladder etc and removed the endo that they found. They also did a hysteroscopy to check inside as well. It has only been a month since my lap. I know what you mean about "expecting" pain. I think that had something to do with what happened this morning - I was expecting it to hurt (and it really did) but I was super tense and anxious about it the whole time. It's hard to relax when you know the severity of the pain that's coming. I won't give up until I can enjoy sex again. It's ironic how I enjoyed it with all the wrong men and as soon as I find the right one it suddenly becomes painful .

Holly - What would I do without you? As always, thank you so much for your constant support. I was thinking I would try AP during the Xmas/NY break so I might find one that is a Chinese Herbalist as well. My appointment is on the 5th of Jan so it's really not too far away. It would be interesting to hear what they say - I always keen to try natural alterntive to all these nasty chemicals I have to put in my body.

My appointment on the 5th is a follow up to my lap so I may get some more answers there - he was only brief on my results i.e. "We found quite a lot of endo towards the back and we removed it. Come and see me in 4 weeks". Talk about leaving me hanging.

[Trillian]

Maybe he wanted to completely rule out one condition and get it sorted before diagnosing another one? With Endo it's so hard to know what is related to it and what isn't, but now you know that things still aren't right, definately bring it up with him when you see him so it can be dealt with too. And either way you would have still needed the lap to sort the endo. I'm so sorry you've drawn the short straw with this hun, it's not fair

[Alan]

Hi Amysarah
The problem with vestibutitis is that no one really knows what causes it. Here are a few tips that may ease the problem for you.
Salt baths. Bathe the area a couple of times a day with warm salt water.
Zinc a castor oil cream. Apply after the salt bath.
Talk to your doctor about the use of a steroid cream.
Kenacomb cream may help help.

[Aimz]

Alan - I'm so glad you popped in here!

What does Zinc A Castor Oil Cream do? Can I buy it over the counter? What would a steroid cream do? Also, I did some googling and found that one person was using Xylocaine which was like an anaesthetic. Do you know much about this?

When you say Kenacomb may help - does that mean that it's probably not the best treatment for this issue? I ask this because it was prescribed by a different GYN to my current one and I have always thought she was tredding down the wrong path with my treatment.

[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...