Anyone else have both HS and PCOS?

Posted , 6 users are following.

In the past year I've been diagnosed with both PCOS and HS. I know that woman with PCOS are more likely to develop HS, since hormone imbalances are thought to play a role in the disease. Well I've been searching everywhere trying to find discussions from others who are dealing with both of these diseases with no luck! If anyone else has PCOS too, I'd love to connect and hear about methods that have/haven't worked. In particular, I'd like to know if diet changes have helped in any way with HS (specifically the AIP diet).  I am finding it hard to believe that changing my diet will help my HS if its being caused by hormonal imbalances. Any advice/info is much appreciated!!!

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11 Replies

  • Posted

    What is PCOS ?
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  • Posted

    Hi Eliana. I have.. well, had PCOS & HS. So I know what you're talking about. smile

    I had HS for 15yrs & PCOS for even longer. My HS is now 90% better, with holistic treatment. My PCOS is well under control too, as per my blood work report.

    I never could identify food triggers forhas HS, so the primary reason for that getting better is Homeopathy.

    Pcos was impacted by my diet. After I have changed my diet, I can clearly make out the difference. So yes, diet can help both your PCOS & HS..

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    • Posted

      What types of homeopathic methods did you use for HS? I’ve read all sorts of things like tea tree oil, vitamin D, zinc, turmeric and the list goes on. 

      Also, was your diet change primarily cutting out gluten and dairy? 

      I am also about 80 lbs overweight now. Did your weight play a factor in any of it? 

      It makes me so happy to know that others have found relief even after 15+ years. Thank you so much for sharing.

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    • Posted

      Sorry for the late reply. Hope you are doing well.

      I consulted a Homeopathic dr (not a naturopath) and followed her advice.

      So she prescribed the homeo remedies, specific to me as a unique individual. Apart from turmeric, which I anyways use a lot of in my cooking, I used none of the items you have mentioned above.. and no supplements either.

      Yes, cutting out/down gluten and dairy have helped. Also, sticking to a vegetarian diet, rich in organic foods. I have only organic milk and yogurt, in small quantities. My body handles these well.

      My PCOS wasn't severe to begin with. So I can eat gulten and dairy (even the non-organic kind), occasionally. But I do my best to control/avoid gluten and dairy intake.

      I'm have always been at a 'normal' weight. I was asked by my doctor to maintain my weight at that level. I do know that my HS prone sites would react to friction. So I have always been careful about maintaining my weight.

      Hope this helps!

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    • Posted

      Hi Chitra and op

      I'm intrigued to read through this post. I've suffered with HS symptoms for all of my adult life (I'm now 32). It took years before I made myself go to the doctors about it, and then was each time told it was just boils or irritating from shaving etc. Finally a year and half ago I had a biopsy taken and was diagnosed with metastatic crohns, with symptoms of HS. I've been avoiding taking any medication other than topical steroid creams during flares, but recently the flares have been coming almost constantly and getting worse. This week I've been in so much pain, barely able to walk or sleep, and now my inner thigh is red and swollen almost down to my knee.

      I'm interested to know how soon you were able to see that homeopathy and diet changes helped? I have always been vegetarian, but other than limiting white bread products, I've not yet identified any foods that trigger it. I've recently started talking cbd (cannabis) oil as it is meant to have an anti inflammatory effect, but I've seen no improvement yet.

      Also, whilst I've not been diagnosed with PCOS, at a recent blood check as I was concerned that I was putting on weight for no reason, no change in diet/exercise, the doctor noted that I had increased levels of Testosterone, which she said could suggest PCOS. I've never been on the pill, but am now wondering if controlling the hormone imbalance might help get my crohns/HS symptoms under control too.

      I find it so hard when doctors know so little about both of the conditions. I had basically diagnosed myself before the dermatologist did!

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    • Posted

      I am so sorry you've dealt with it for so long. To answer your questions, I have heard that nightshades are very commonly the culprit of HS but know that other people have issues with legumes as well. About your increased testosterone levels, that is very interesting to me. I have been told that it is one of the first signs as well as weight gain. Are your periods still normal?

      There is believed to be a link between androgen levels (testosterone) and HS, which is why the two often come together. In my reading, I found that it has something to do with the follicles reaction to androgen levels. When you think about it, it makes sense. Higher testosterone means more follicular activity and since HS is believed to originate within the follicles themselves, it makes sense why HS can worsen or even be brought on by changing hormones. To add to that, there is also a link between weight, HS, and hormonal imbalances.

      I am currently being put back on the pill (despite my hatred for BC). The only reason I am going along with it is in order to stabilize my hormones in attempts to block the effects of testosterone (even if it isn't naturally). I am also taking Spironolactone which works well with the BC to block testosterone. In addition I am taking inositol supplements (brand name Ovasitol). Inositol has recently found to help PCOS patients tremendously by stabilizing blood sugar as well as hormones. Overall, I would talk to your doctor about ways to lower your testosterone BUT at the same time I think that its important to find natural ways to get rid of hormonal imbalances (diet, light exercise, stress management). My game plan is to continue taking the medications while focusing on weight loss with the hope that ultimately the healthy lifestyle changes will send both the HS and PCOS into remission. 

      Basically, I think it is highly likely that your testosterone levels are contributing to your HS and would discuss more with your doctor. I know your frustration with the conditions not being well understood sad I hope you find relief soon!

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  • Posted

    I haven't heard of PCOS, but if I can help in any way let me know. I have HS and it's help, so I can't imagine what your going thru with both. Sorry, I really couldn't be more help.

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  • Posted

    I have recently been diagnosed so I am reading everything I can and almost everything I have read has said diet. I did read a few things about HS and PCOS presenting together.

    I have also read a few things that say because HS is an inflammatory disease, we become prone to other inflammatory autoimmune diseases.

    In the end, diet was the only common treatment. What triggers your immune system will be individual to you but I'm seeing dairy and gluten as some of the biggest factor among the majority.

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    • Posted

      I been having HS since i was 19 and never really looked at into what my triggers was. When I was overweight for my height it was ok. I have a lotion that works miracles from my dermatologist. I also use tea tree oil and coconut oil as a lotion. If you just been diagnose, it should be that bad right?
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    • Posted

      I started having skin problems around age 16, I'm a month shy of 27 now. I've been highly athletic my whole life. It wasn't till this past year I gained weight (about 20lbs "over weight"wink. My flare ups have been about the same severity no matter my weight but with that said I know I'm pretty lucky because I only have stage 2. I was officially diagnosed about a year and a few months ago. I tried the antibiotics and I only lasted 3 months on them. The last month I was vomiting every day.

      I'm currently 6 days into trying the lotion and I have not seen any improvement, but it hasn't gotten worse. That to me is a little win!

      I don't know if anyone else is experiencing other symptoms but I've been noticing when I have a flare up, that's when I gain the most weight, even with dieting and exercising. I'm also experiencing some Crohn's symptoms but we know I don't have Crohn's.

      I was so excited to find a forum to discuss and read others experiences so that we can find solutions and relief.

      Going back to your original comment, I have my good and bad flare ups. Sometimes it's a few boils here and there other flare ups I can barely touch my skin or even let my skin touch itself without being in pain. I was so embarrassed to go to the doctors I suffered through about 5 really bad years before I went in. I'm excited to try the oils and work through an elimination diet to find my food triggers and find relief!

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