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Help, flaring and questions about phytoestrogens/ hormones etc

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  • Help, flaring and questions about phytoestrogens/ hormones etc

    I've had IC for >20 yrs. I've done most treatments excepting cyclosporine, though I am interested. In the last 8 years my IC symptoms have lessened to the point that I thought I was in remission. I noted that as I headed further into perimenopause my bladder capacity increased and was recently holding > 2 cups liquid no problem. I had noticed that my libido was waning approx. 3 years ago and I took estrogen orally for about 4 days and I suddenly went into a flare that lasted >2 months. So that is when I finally knew that estrogen drove my pain. I wrote a letter to a mast cell researcher and asked her questions about this and here is the link Since then I have avoided estrogen supplements and could even start my pain by using topical Biest. If I used soy products or pea products I would hit this tipping point where pain would start. The phytoestrogens would attach to estrogen receptors on mast cells in the bladder and cause degranulation and pain. Loratadine would help if I used it immediately and stopped soy/pea and if the flare wasn't too bad. That flare 3 years ago was not held in check my Loratadine. So, I am again in a flare. I had a cold recently and noticed when coughing that I leaked a bit due too low estrogen, but no bladder pain. In fact, I was considering using some topical estrogen very carefully to manage the leaking. I also started to take a supplement called resveratrol for health reasons. I did not do my research (which I regret) and after taking it for 4 - 5 days my bladder started to tank. Loratadine did not help at all and my capacity went from 2 cups to 2 tbsp, or even less. Nothing is working and when I researched I found out resveratrol is a phytoestrogen and quite a strong one at that. Also turns out turmeric is a weak phytoestrogen so two of those on board and like an idiot, I ate soy bean sprouts not once, but twice, unwittingly. I cannot handle this pain and 90 mg of opiotes a day is not helping. I cannot work at this point. I work in a hospital and need to focus but the pain is too distracting. I am worried because now I am wondering if there is a "sweet spot" with estrogen where too much in my bladder worsens it and too little (I was recently leaking) also worsens it? I am wondering if anybody can share their experiences with IC and hormones and if they found a link for themselves? I had even considered doing the leuprolide acetate injection, I will put links here, AND this one,, to try and reduce pain by ridding myself of estrogen. However I am worried that this might cause atrophy of bladder and vaginal tissue and worsen things also, though in my experience estrogen worsens everything for me and no wonder my twenties and early thirties were pure misery. Anyway, if you made it through this huge rambling post and can share your hormone/ IC experience I would be grateful. I have DAO, PEA, CBD, bladder ease and the DNA sequencing test for bacteria on order and I hope something helps me. I have again started following the diet, take Loratadine daily, , fish oil pills and convinced a physician to give me Macrobid just in case this is a UTI because I did have one once with IC and it felt similar in that my urethra burned. If anybody has also used low histamine diet I would love to hear about that as well. Good luck to anybody out there with this issue that is trying to resolve it.

  • #2
    One thing you might try is keeping a detailed diary --- that can help identify triggers. What you do is jot down time of day, everything that goes in your mouth, urinary frequency (and about how much each time), activities, and pain levels. Then you can compare different comfort levels by reviewing the diary.

    Stay safe

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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool


    • #3
      Hi here's my short story. I am in perimenopause and approaching menopause and my estrogen is dropping. I also have low testosterone. My gynecologist put me on a low-dose estrogen vaginal insert due to vaginal atrophy that she saw. The peak of absorption happens at 4 months and at that point my IC was flaring and flaring and I figured out why. Some IC is caused by histamine... histamine and mast cells are closely related I'm not going to explain the science to you you probably already know. Estradiol which is the in the insert that I put in vaginally which is supposedly minimally absorbed increase mast cell activity which releases histamine and hence flares the bladder. There are many studies that show the relationship between estrogen estradiol and mast cells and histamine. This is the connection I can't explain it scientifically but I've read from people who can. So I stopped the estradiol and within two months my crazy reactions to allergens being weeds, trees, pollen, mold, strangely enough Believe It or Not squash yes I was tested by an allergist calmed down considerably. Mind you in absence of the estrogen all of my menopause symptoms perimenopause whatever are back my IC is under control as long as I mind my diet. I recently read that DHEA is a vaginal insert relieves vaginal atrophy as well as any estrogen without raising the body's estrogen or funky-ing with your mast cells.... so I have found some online and I'm going to get them ago. There's also Buckthorn Berry oil not the seed oil the berry oil which will increase vaginal lubrication if you take it to pills this is what is online and I have looked into the research and it supports it. So this will be my new strategies I hope maybe they help you. IC is difficult and it gets more difficult what I don't understand is as my estrogen drops my Mast Cell reaction should drop and I should feel better I suppose this is as long as I don't add any estrogen which I shouldn't because I'm in a high cancer category and that's just not a good idea. Well I hope this helped you it's all been very confusing and painful. Occasionally people will have one or two sentence answers that work for them and that's nice for them. Rest of us struggle and most of us feel alone I know that and we are alone a lot of the time especially now. So hang in there and everybody keep trying things in your own Solutions that's how we go from day to day today.