Vestibulitis = Painful Sex (TMI)

When is the painful sex going to end??? :crying:

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. :(

Oh hun, at least its not a loveless marriage.

I hope you get some answers too, and soon xoxoxoxo

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...

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. :pray:ing that you get an answer soon.

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

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 :D

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

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 :rolleyes:.

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.

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 :hug:

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.

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.

Hi Amysarah
Zinc and castor oil cream will do 2 main things for you one is to sooth the are the other is to help it heal. As I said before one really knows what cause of vestibutitis but some circles suggest it could be related to infection. You would only need some very minor damage for a bug to get in and cause infection. Yes you can buy it over the counter and it is as cheap as chips.
Steroid cream will help with the inflammation.

I do know about xylocaine also called lignocaine. It is what they use when you get stitches. (often called a local). It is also in many products such as emla cream and SM 33. I am not sure if it would be ok to use on the vagina mucosa as it can cause irritation but if you want to take the chance then youst try a small amount first.
Kenacomb may help because it can help with inflammation. Again it is something that is not overly expensive so it would be worth giving it a go.

Alan - my first GYN suggested that it was an infection that could have been related to an untreated bout of thrush. This was the part I couldn't understand because I have never had much trouble with thursh (maybe once or twice in my life). I have Kenacomb and will start using it again until my appointment on the 5th. Can I use Kenacomb and the Zinc cream or is it best to use one or the other?

Sorry for all the questions but I really appreciate your help - I am seriously at my wits end with this.

Don't worry about asking me questions, that is what I am here for.
If you wish to use the 2 creams at the same time I suggest that you first apply the Kenacomb first. However I think it would be a littel better if you first applied the Kenacomb and waited a couple of hours befor using the zinc and castor oil cream

I might do that then:

Salt water bath followed by Kenacomb and then before bed I'll apply the Zinc. Will I still be ok to use the DiFlucan once a week as well?? Would you recommend that?

This is just until I can get to my appointment on the 5th and work out a plan of action with my Doctor. At least I will be able to see if the combination of the creams and the DiFlucan has made any difference by then.

Thanks so much Alan.

Diflucan is used for fungal infections and could well be useful. You can use it with the other creams but again try to keep the application of each cream apart by a couple of hours

Popping in....

This is in relation to your anticipation of pain... I had vaginismus and FSD (female sexual dysfunction - impotence for women, you don't get engorged or wet) for most of my teens and my early 20's because of the abuse i'd suffered as a child - ironically i never sought medical help because i thought sex was supposed to be mildly-moderately painful for women every time they did it...

Anyway, i was thinking, if you are there all tense and worried about pain, some of the pain you have could be that of vaginismus - the muscles around the opening tighten up hard and NOTHING is going in there without it hurting. It felt like the penis was made of sandpaper to me. People would say "use lube" but lube only helps if you can release your pelvic floor! With lube it would sometimes go in (mods if i'm too graphic then remove this and i'll PM instead) but within a few movements would feel like broken glass at the entrance because the muscles were still fighting to close my pelvic floor.

So eventually i realised it was muscular and the combination of some relaxation exercises and being with someone who i really trust and love (not a problem for you :)) really helped. I banned lube, and if i cannot get relaxed and aroused myself we do not have sex (i almost always can nowadays). The problem is that physical issues can LEAD to psychological ones because nothing wears you down like pain.

I don't know if this is any help to you, but it's worth discussing with the gyn as they might well be able to help if you have vestibulitis caused by vaginismus. I think i read once that you can tell the difference because with vestibulitis the skin down there hurts whenever you touch it, and if the problem is vaginismus then it's inserting things which causes the pain, and many women can use tampons, insert a finger themselves etc. without issue but when it comes to sexual contact they have problems and pain (though some women with vaginismus can NEVER insert anything- it depends if it's sex causing the anxiety and spasming or just any and all general genital contact).

I hope you find solutions really soon hun.

Bx

amy im sooo glad you brought this up....im in exactly the same positon as you...its been happening for the last year and its so painful...i asked my gynae why and he said its because my womb and everything is matted together and it gets sort of jarred when dtd. im going in the 9th of jan for a dnc, camera and for a iud to be put in to help with the bleeding and to try and prolong the amount of time before they have to do a hystorectomy...just so you are all aware every gynae i have seen has told me il need a hystorectomy because theres to much pain and basically my womb is stuck to my bowel because of adhesions and they cant do anything to release them..its to risky. iv seen 5 gynaes and 12 surgeons. last night when dtd i was in agony the only way to describe the pain is that iv got a hot knife down there and it lasts for hours. sorry got no answers i just wanted you to know you are not alone .. xxxx

Bec - You described DTD perfectly - he can get it in with enough lube (although even that creates horrific pain) but within a few movements it's like sandpaper. From what you have described it sounds like I also have vaginismus but it is definitely vestibulitis - I cannot wear tampons and when I was diagnosed my GYN pressed on two points during an examination and I nearly fell off the bed. However, now that I expect pain I am 100% sure that my muscles not being able to relax are playing a major part.

We try everything to relax - STACKS of foreplay, warm baths, lube, massages, change of positions etc. Sometimes he can get it in after all that but the majority of the time he just cannot get it in at all. It is literally impossible without an enormous amount of pain. It feels like I am being ripped apart. Even today I am still sore from yesterday's measly attempt.

Thanks so much for your help hun - I will bring that up with my GYN in Jan that Vaginismus could be playing a role in this too.

Rach - Big hugs babe :hug:. I can't even begin to imagine what you're going through. It must be a scary prospect to know you have to have a hysterectomy and to be told by that many doctors. I thought my little bit of endo was scary enough so please know that I am holding your hand through all of this. The pain you described it spot on.


What I don't get is this... What did I do in this life to end up with not one but TWO different types of painful sex? It's just not fair. :angry:

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.

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?

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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?

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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

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

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

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.

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.

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

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 ;)

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.

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

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, :hug: *getting off soapbox now

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!!

:wall:

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

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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!!

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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 :)

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... :pray:

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!!

:pray: