Living with Vestibulodynia (VVS) & major relationship strain

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DollyPolly Posts: 23
Hi wollies, So we got married, had an amazing day, can genuinely say it was the best day it possibly could have been and myself and the now hubby have such great memories of it. We went away on the honeymoon and had the time of our lives! But now, 3 months in and we still haven't managed to make love, in fact there is no intimacy in our marriage at all. I have been suffering with a vulval pain disorder called vestibulodynia, or vulval vestibulitis, since our engagement 21 months ago making sexual intercourse impossible. It seems impossible to treat, I've yet to find a gynecologist or gp with any decent knowledge of it, I'm probably going to have to go to the UK for treatment. It is completely soul destroying to say the least. Not only do I experience chronic pain whenever we try any kind of intercourse, there are never ending psychological problems caused by this too. I've spent endless hours researching it and trying to understand it, and I know that no matter what pain discomfort or self-loathing I'm experiencing it must be the same if not worse for my new husband. We're young, mid twenties, and had a really fun and active sex life before I got this condition. And now we can do nothing. And I'm really terrified that it's wrecking any chance we might have of a healthy relationship and marriage. Because penetration is impossible I have tried and tried to encourage him to try other ways and explore other things, but I am hitting a brick wall at every turn. It's gotten to the stage now where he won't even kiss me passionately let alone allow it to go any further, and I feel like I'm constantly throwing myself at him. Is there ANYONE out there who has/is suffered from this or something similar?! Can anyone offer any advice on what I should do?? Or can anyone recommend someone I could talk to? Please please help if you can, I love him so much, I can't imagine living without him but if things don't improve I'm not sure if I can burden him with this for the rest of his life. He loves me I know, and has said that he's with me forever regardless but I don't know if I can do that to him. Yours, DollyPolly.
Funwedding Posts: 190
Hi I do not suffer with this but I was on the other side of a sexless relationship and I wanted to applaud you. Please keep trying to solve the problem and keep trying to make things work in other ways. My biggest problem was not the lack of sex but that the person who is supposed to love me the most did not want me and did nothing to change this. I know of other people who have issues with sex and they can only see their pain but you really are so considerate and see both. I wish you every success with a solution and your husband is a very lucky man to have you xxxx
DollyPolly Posts: 23
Thank you xxx that is the first positive reaction I have had towards this whole thing. It's not that I don't want him at all, purely that I can't endure penetration (apologies to any delicate readers, but I'm beyond embarrassment at this stage.). And now it has lead to an entirely different problem in that I don't think HE wants me at all! Sigh. Good luck with your own situation, it's not easy when something that so many take for granted goes against you, and the psychological issues can often be the biggest hindrances to fixing the problem. Xxx
Funwedding Posts: 190
Ahh you poor thing... believe me there are loads of people with problems in the bedroom... I only found out after I left mine and spoke to others about it there were so many like me. I do not think that your husband does not want you. I found it easier to shut down that side completely and any arousal was annoying because I knew it was going no where... in my case it didnt you sound like there can be other forms of intimacy hmmm tough one... I know a friend of mine had problems with penetration and she went to counseling it was mostly solved this way sometimes she struggles but she described the same thing lots of pain. Lubrication was also mentioned. (seriously freaking out the dedicates now!!lol) She is a very anxious person and has been working on that. Sorry Im not sure exactly what VVS is so hope Im not being patronizing. She was so worried about getting pregnant early in life that she had closed the whole thing up and it had stayed like that. She needs a lot of warming up but she is able to have sex now. And believe me if your husband sees you do everything you can to find a solution and acknowledging his feelings it makes a world of difference. I really hope you find a solution xxxxx
Flower Girl Posts: 1645
Would you or have you considered going to see a sex therapist? If you're in Dublin, Dr. Eimer Philbin-Bowman works out of the Well Woman Clinic on Pembroke Road and is supposed to be very experienced with all sorts of sexual issues (some info at the bottom of this page: [url:2dn8ui48][/url:2dn8ui48]). Sometimes even with physical issues that don't have a specific cure, there are exercises and things that can help to make sex enjoyable again. Hope you get some answers, and fair play to you for trying to fix things - the very best of luck.
DollyPolly Posts: 23
Wow, I'm really bowled over by the positive support thanks so much ladies. VVS is a vulval pain disorder and is unprovoked meaning there is no specific cause, but the nerve endings in your vulval glands basically become extremely over sensitised to the point of extreme pain. It is most common in pre-menopausal women. I'm 26. There is no knownocure. And doctors only began acknowledging it in the late nineties. I've tried surgery already to no avail, I've tried very strong medication and nothing. I'm now going down the alternative route of acupuncture and reflexology to see if maybe by getting my body back in sync it may all balance out. I went to counselling for 6 months, it wasn't caused by a psychological issues but it sure is causing one!! It's completely soul destroying I have to say, but actually since getting your comments I've perked up a bit about myself and how I'm handling it and started giving myself a little more credit! We're even less intimate now than ever, no sexual exploration at all. And I don't know what to do. I'm really afraid that were just going to settle into a nice little living pattern and things will never go any further than a quick peck and a cuddle. because that's how it's looking from here! Anyway, I just wanted to say thank you for your messages. And if anyone with vvs at any stage in the future stumbles across this thread please please please pm me, I'd love to get in touch with someoneswho knows what I'm going through. Xxx
Inline - Algarve WP
DollyPolly Posts: 23
UPDATE: So a new gynecologist has diagnosed me with endometriosis disease, and is doing a laparoscopy on 7th November to confirm his suspicions. I have to say, though I've only researched it a little and what I've seen seems to be indicating that it's a life long condition, I'm still slightly relieved. At least this is a condition/disease that can be treated, there seems to be a reasonable knowledge of it in Ireland, and anyone who knows what I'm going through had heard of it before. So fingers crossed for 7th November! Xxx
Noisin Posts: 448
Sent you a pm DollyPolly
Funwedding Posts: 190
Oh sweetheart I can not tell if your happy with this news or not but wishing you all the luck on the 7th if November xxxxx
hoareni Posts: 7
I was just wondering if this thread is still active? I also have vulvodynia and have tried acupuncture, physiotherapy, MRI scan, osteopathy and god knows what else but to little avail unfortunately. I am also newly married and it is causing a strain despite my husband's enormous patience with it all. To top it off I then had a bike accident and thought I'd broken my pubic bone which has caused the original problem to be much worse :(