I don't know what to do anymore. I feel lost...
Hii, i'm 23 (from the Netherlands) and i've been struggling with Vulvodynia for about 4 to 5 year now. When it all first started the doctors kept diagnosing me with yeast infections. Kept getting treatments for that and for a short period they worked. Until the pain became so intense I couldn't walk, i couldn't sit and i couldn't have sex anymore. It was burning, itching and i had alot of fissures. I was so sick of it and went and did my own research, until i found the term 'Vulvodynia'. I went back to the doctors with that information and she thought the same thing. I went to a pelvic floor specialist, and got hormonal creme. At first i thought it worked, but i didn't.
Now 4 to 5 years later i'm still dealing with it. I first went to see a Gynaecologist about 4 years ago (which she told me to just not have sex anymore and send me back home). My doctors wouldn't really know what to do anymore with it either, and only gave me 'Vaseline Parafine' and 'Cetomacrogol' to help it keep moist.
Last year i begged my doctor to send me to a different Gynaecologist in a different hospital. I got an appointment there, and based on my story she told me she couldn't really do anything beside give a different hormonal creme to try (It was a very strong hormonal creme which made things worse so i stopped shortly after it) and send me to a special hospital with a vulva expert and a dermatologist.
Full of hope i went to the specialists thinking that i was finally getting some real help. And ofcourse at that moment my vagina looked completely fine. They looked at it and ofcourse said they didn't really see anything. No lichen sclerosus or anything. (which i'm still not sure about that i don't have it, because of the fissures that continue to come back and how many i had)
I told them that i had most of my big flare ups around my period (like 10 to 7 days before) and that it became a pattern. They told me that maybe i can try using birth control again and that it could help it. (I stopped taking birth control about 5 years ago i think because i was sick of the hormones, since then have been hormone free). Because they told me that birth control could help i reconsidered starting again. I have now been taking them again for about 2,5 months ago (with no stop weeks). I know that the body needs time to get used to the birth control again. But i don't know if it will really help.
At this point i'm so sick of it. I feel like nobody knows how to help me, or is even listening to me. I do have a boyfriend of 6 years and he is super supportive in it all. But ofcourse because of it all i can't have sex with him, which is really hard me mostly. (My BF accepts it tho, he knows how bad i'm struggling and keeps telling me that sex is not everything. Which truly bless him on how supportive he is)
It does really really impact my mental health at this point. The burning pain and itching continues. ( some days are better then others). The fissures keep returning and sex is still impossible. Everyday I'm still struggling with it. It's truly been taking over my life for so long now.
(I'm seeing a sexologist and I'm on a waiting list for a different pelvic floor therapist. But i don't know if it's gonna help me)
Sorry if my story is all over the place. English is not my native language. But i just wanted to share my story to hopefully not feel so alone after all those years. And maybe get some advice on this.