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Hormones and Vulvodynia?

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alexandra_30382
alexandra_30382

 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!

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  • lyndsey45525
    lyndsey45525 alexandra_30382

    Posted

    I have the exact same issue but I had a hytercectomy a year ago. My OB says its Vulvudynia and to stop eating sugar and anything acidic and it will go away.?Thats a bunch of BS. So I went to a vulvodynia clinic and tgat OB said my pelvic floor muscles arelije guitar strings so she referred me to PT, I just started once a week and it has helped but not cured. I do notice the change with my cycle and I dont get relief when my period starts now bc I no longer bleed as blood is alkaline . Please let me know if you find relief. Im still on the mend. 
    • alexandra_30382
      alexandra_30382 lyndsey45525

      Posted

      My pelvic muscles go into spasm but this started after the vulvodynia. I saw a reflexologist who happened to specialise I’m hormones, fertility and women’s problems (a happy accident as she does my sister’s eyebrows which is how I met her!). She did not know my problem but still incorporated all her knowledge into treatment and helped me relax my pelvic muscles enough after a few sessions that sex was possible for me. This may not work for everyone as it was all me relaxing my pelvic muscles, just with guidance. You may benefit more from acupuncture or a massage, but if possible I would recommend trying one of these things a few times. Now I only see my reflexologist when I feel my muscles spasm, however I am getting better at recognising and relaxing them myself. It has not helped my vulvldynia but helped my pelvic and abdominal pain that has stemmed from the tension
  • Suki_girl
    Suki_girl alexandra_30382

    Posted

    I think it is definitely related to hormones. My vulvodynia started when I first entered pre menopause. But I am not sure how you deal with that aspect of it. There have been women in this forum who said the pain went away when they came off the pill. But you are off it now, yes? I did notice that the pain lessened a little when I took norethisterone (progesterone to stop the period while on holiday). But really, for me, the long path (2 years) to being pain free involved amitriptyline, acupuncture, manual desensitisation and pelvic floor exercises. 
    • jacky06086
      jacky06086 Suki_girl

      Posted

      Hi Suki girl,

      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
      Suki_girl jacky06086

      Posted

      I am indeed 100% pain free, i have been for about 3 years, and able to have pain free sex. However, I am still on amitriptyline (it is very good at helping women sleep through night sweats, which I am having due to menopause, so I stayed on it, on the recommendation of my GP.

      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
      jacky06086 Suki_girl

      Posted

      Hi Suki,

      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
      alexandra_30382 Suki_girl

      Posted

      Dermovate lessened my pain a lot, it really helped the burning when going to the toilet and now my pain is more provoked. I have been off the pill for a while now but I believe it takes longer than most think for your body to recover. My pelvic muscles go into spasm when my vulvodynia flares and reflexology has almost cured me of that. Now I am on pregabalin 75mg once a day to help the provoked vestibulitis, so I will update on that as I have only just started. 

      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
      Suki_girl jacky06086

      Posted

      You massage where the pain is, which should be the vulva area. Mine was posterior to the vulva, belt even the virginal opening and the anus. In acupuncture they do not sick the needles where the pain is felt but into the channels of energy that lead to that area (oriential acupuncture) or near the nerves leading to the area (western acupuncture). I had western acupuncture and the needles were in my sacrum. It felt wonderful and relaxing. Do you feel the pain internally? 
    • jacky06086
      jacky06086 Suki_girl

      Posted

      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
      Suki_girl jacky06086

      Posted

      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
      jacky06086 Suki_girl

      Posted

      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
    jacky06086 alexandra_30382

    Posted

    Hi Alexandra,

    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
      jacky06086

      Posted

      I meant 9 main muscles not nerves. There are thousands of nerves.
    • alexandra_30382
      alexandra_30382 jacky06086

      Posted

      My pelvic muscles do go into spasm when my vulvodynia is bad and that has been shown. What helps me learn to relax them is reflexology. I don’t believe that pelvic floor spasm is the cause of my problem but rather a consequence, so I am working on that separately. Reflexology or some similar treatment may help you even more with your problem! I’m glad you’ve found something to give you relief. 
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