Hormones and Vulvodynia?
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I have been diagnosed with vulvodynia throughout 9 months of burning and soreness. The glands of the vestibule are red but that is the only symptom. I have seen two specialists who have been helpful but ultimately fruitless.
The pain builds up after my period to a peak during ovulation which then begins to very gradually decrease in intensity until almost disappearing during my period to then start the cycle again. Whilst on Microgynon the pain was constant throughout the month where it usually fluctuates, so I am wondering if there could be any hormonal link?
I have extremely painful, heavy, long periods but they are regular. I had hormone tests for this reason a year ago and the GP claimed very high testosterone but everything else was within “normal” levels, however she debated for a while about PCOS before deciding against it.
The pain started after a period of trying different BCPs of which none agreed with me, during which time I battled a number of yeast infections due to the pill.
I have had every treatment for dermatitis, a biopsy as well as antibiotics for BV which did not help. However, what remains constant when not on treatment is the improvement during my period.
Any theories or advice would be greatly appreciated! I am only 22 and this is having a huge impact on my self esteem and relationship!
0 likes, 21 replies
bally1 alexandra_30382
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alexandra_30382 bally1
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lyndsey45525 alexandra_30382
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alexandra_30382 lyndsey45525
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Suki_girl alexandra_30382
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jacky06086 Suki_girl
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I am curious! Are you 100% pain free now? Would you mind telling me which doctors you went to see for acupuncture, manual desensitization? What is the process of acupuncture and manual desensitization? And what kind of pelvic floor exercises do you do?
Suki_girl jacky06086
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I saw Dr Sue Cooper at the Churchill Hospital in Oxford, privately, but she does run a vulva pain clinic for nhs patients. She was the one who recommended acupuncture (in combination with 70-70mg amitriptyline) and told me how to do the manual desensitisation. For the acupuncture I saw a GP (privately) who also did western acupuncture in Buckingham, but she no longer does it. For the pelvic floor exercises I used the book Seven Steps to Pain Free Sex by Claudia Amherd.
jacky06086 Suki_girl
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That’s amazing! And congratulations on being pain free. That must be such a great feeling to find some relief from the pain. Did you have localized pain or general pain? I heard localized pain can be removed with surgery but my pain seems to come and go and are not always in the same region. Do you have videos or articles that you go to when you do manual desensitazation? Is that basically massaging the interior the vagina so that the nerves start to build resistance so that touch no longer registers as pain? As for acupuncture, do they stick needles in the interior of the vagina or the outside? I currently live in New York and will not be able to see the doctors you recommended but thank you for your information. I will try to find similar doctors here in the US.
alexandra_30382 Suki_girl
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I believe there is a hormonal link, perhaps because of heightened sensitivity through hormone changes. I don’t think I will ever know what caused my vulvodynia, but I do think that people need to be aware of the longer lasting effects on the body that artificial hormones can have.
One suggestion from the gynaecologist was to try a progesterone only pill/implant, however i am now strongly against hormonal contraception after my experiences and do not see that as the answer to my problem, hormonal or not. For some people this may work great, but the pill has not yet agreed with me and I cannot see an implant being any different.
Suki_girl jacky06086
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jacky06086 Suki_girl
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Hi Suki,
I feel the pain both internally and externally. A doctor once told me that the exterior pain is caused by the interior. I've been doing manual desensitization and feel that the interior has gotten a lot better I feel that manual desensitization might not be enough alone. I am in search for an acupuncture doctor here in the US. My only fear is not being able to find a doctor who specializes in that region... Thank you for all your tips! I plan to continue to work through and find relief.
Suki_girl jacky06086
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If your muscles are very tight you mat benefit from physiotherapy. You need to find a physio that specialises in the female pelvic region. Some women have found that was all they needed to become pain free. Also try pelvic floor exercises which teach you to become aware of your pelvic floor muscles and to control them. I recommend the book 7 Steps to Pain Free Sex by Claudia Amherd. Apologies if i have told you all this already, i forgot what I've told to whom.
jacky06086 Suki_girl
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Hi Suki,
Yes, I feel the interior has gotten a lot better but sometimes I still feel the same amount of pain in the exterior. I think it might also be related to my bad back... I will look for a physio therapist as that seems to be a good route to go. Thank you for the recommendation on the book - I just bought it and look forward to reading that.
jacky06086 alexandra_30382
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My situation is very similar to yours. I do experience stinging/ swelling outside of my vulva which is the only difference. I have already been diagnosed with vulvodynia and I am 25. I also realized that my pain seems to disappear/ decrease by a lot when my period is here. I spoke to a doctor and they told me that when you’re on your period, your body releases something that is kind of a muscle relaxer. I do believe that is related. So I’ve been massaging the interior of the vagina with little amounts of coconut oil. There are 9 nerves in the vagina and I have been told that my muscles are very tight. I have found the massages to be helpful but I am not 100% cured. I hope if I continue longer it will help. I am still trying to find other ways to relieve this pain because I am 25. And I don’t plan on living the rest of my life this way.
jacky06086
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alexandra_30382 jacky06086
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