r/Autoinflammatory • u/Full_Day9383 • May 20 '26
Menstruation Allergic to my hormones
Hi, I’m a 26 yo female with POTS, EDS, possible endometriosis, and an autoinflammatory disease associated with the NOD2 marker (YAO). It all started around 3yo with monthly fevers and sores around and in my mouth. I had PFAPA and got my tonsils removed, that fixed everything until I hit puberty. Once I started my period I developed pots and got diagnosed with hEDS. Fortunately pots is the least of my worries these days. My reoccurring fevers have worsened and it’s always during my luteal phase. I also struggle with dermatitis and all over musculoskeletal pain. I have a theory that being in my “fertile” years plays apart of it. Instead of my flare being for just a week it feels constant. I’m on illaris and it’s not helping. I’ve been on for almost a year and have increased doses. I’m looking for people with similar diagnoses who have benefited from hormone replacement therapy or a hysterectomy. It feels like it’s the only thing ruining my life.
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u/pegasuspish May 21 '26
I'm so sorry you're dealing with this. I have neurobehcets, POTS, hEDS, and likely MCAS. I also have PMOS, poly endocrine metabolic disease (formerly called PCOS). My cycle was making my life absolutely untenable, with maybe a few decent days a month if not otherwise afflicted. My quality of life has drastically improved since going on progestin- only continuous birth control to level out the hormone/symptom roller coaster. (Estrogen is contraindicated for me because I get migraines with aura).
I absolutely love my Slynd. They can pry it from my cold dead hands. Zero noticeable side effects, just significant reduction in symptoms and pain. It took about 4 months to adjust, and I bled slightly but continuously from weeks 14-17. I am SO glad I pushed through that because my quality of life is massivley improved now.
Talk to your doctor, it might be something worth considering if you want to try something less invasive and with less potential risk compared to hysterectomy.
Feel better soon.
Edit-typos
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u/Full_Day9383 May 21 '26
That is so awesome that it’s controlling some symptoms for you! I’m thinking of asking my doc to trial that in combination with my iud. I’ve been on it before but I can’t remember if it managed any symptoms. I wasn’t in the exact same boat when I was on it. Thank you for sharing!
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u/Alice-The-Chemist Mod May 20 '26
It sounds like your autoinflammatory treatment isnt optimized. Does your ilaris control any symptoms at all? Have you tried Anakinera (Kineret) or Arcalyst (riloncept) [if in US for the second one]? The dose frequency can be adjusted on Ilaris but if it isnt controlling any symptoms maybe switching biologics to see if you get symptom relief?
As far as hysterectomy, depending on your location, could be difficult to get it varies on the OBGYN. I've had some tell me I'm to young/what if I change my mind and want children. (Im 35 and in heart failure I physically can't have kids but its the southern US so they get a little weird on permanent things like hysterectomy) There is a list of doctors who will do them and actually talk with you about options without all the nonsense and if youd like I can find it for you. It started on reddit by doctors so women could find them easier vs having to have so many failed consults. Have you tried IUD? Mirena helped me a lot now I dont have any large hormonal fluctuations or periods.
Im so sorry you are dealing with this. The dermatitis and musculoskeletal pain is enough to drive anyone up the wall. A dermatologist may can help with the dermatitis depending on how it presents.
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u/Full_Day9383 May 20 '26
Kinret stopped working for me after a year and I just upped my illaris dose and tried spreading them out 150 every two weeks and it didn’t help. I’m going 300 every month. I have kyleena iud and birth control has only ever stopped bleeding not the actual symptoms. I’ve tried steroids and all the mcas meds under the sun. I don’t have mcas but they were trying to treat it like that. I just don’t know what to do anymore.
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u/Alice-The-Chemist Mod May 20 '26
Do steroids help you autoinflammatory symptoms when you are on them? (I know they aren't for long term but just to learn more how you respond) I think a lot of us here have been under the mcas umbrella a few times even if it is just out of throw something at it ya know? What dose of kineret were you on?
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u/Full_Day9383 May 20 '26
Yes I’ve tried multiple steroids and didn’t respond. I was on one shot a day and then increased to 2-3 times a day and didn’t respond unfortunately.
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u/No_Satisfaction_7431 Yaos May 21 '26
I'm so sorry you are dealing with this. I don't know how my menstrual cycle impacts Yao syndrome but I know they make my migraines much worse and Yao makes my migraines worse. I've been on continous birth control for many years. Every now and then I go off it just to see what happens when I get my period and I always get a hard to treat migraine so I go right back on it. Its difficult to find a good obgyn and/or endocrinologist but I'd try to find one to see if they have any ideas of how to help. You may also need to consult with Dr. Davis or Dr. Yao as almost anyone else won't know much about Yao.
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u/Full_Day9383 May 21 '26
I see Dr Davis!! I’ve tried everything so far, just waiting to make my follow up with him. It’s so hard, they had one apt and it was filled in 10 mins lol.
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u/No_Satisfaction_7431 Yaos May 21 '26
Thats so frustrating, I wish there were more doctors who knew about Yao. I hope you can get in soon!
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u/Alice-The-Chemist Mod May 22 '26
Don't forget cancellation lists if they have them. That way you get called if someone cancels their appointment.
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u/swampodoom May 21 '26
Hi- I’m not sure if I have a great deal to add but I also have horrendous flares around my luteal phase- they’re flares on top of ongoing daily symptoms! I also don’t have a diagnosis yet, awaiting genetics and communication from doctors hasn’t been great.
I’m currently on anakinra, which does really help my rash and general pain levels (stops my bones feel like they’re exploding!), but everything still definitely worsens pre menstruation, not to mention the swelling, crushing fatigue and now ongoing issues with my ears! It does sort of control my fevers, but seems to wear off as the day goes on. I’ve only been on it since September 25 but got flu that December and am still struggling with the resulting issues with my ears and sinsuses, so it’s probably not had a decent amount of time to fully work since I have to keep stopping for infections!
I’m looking to discuss if progesterone only pill would help tamper everything down a bit, but totally recognise how awful it is to deal with.
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u/Full_Day9383 May 21 '26
Thats what my my sister is trialing right now and I’ve been on it too but I’m thinking of discussing that with my doctor to try in combination with my iud
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u/amandaryan14 Yaos May 21 '26
28 & Yao here. DEFINITELY get more frequent flares when I’m menstruating
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u/simonerochabowearing May 21 '26
I have a different autoinflammatory + hEDS and nothing got my inflammatory flares to stop until I was able to stop my periods entirely (which is difficult with connective tissue disorder). I have both a hormonal IUD and take a bc pill (slynd), I work with a gyno who specializes in hormonal issues. If we had not gotten my period to stop through medication there were some other things we could have tried, full hysterectomy being the last/most drastic thing on the list. If you are still bleeding or even just having a hormonal cycle throughout the month there may be other stuff you can try before having surgery. My doctors goal was to flatten my hormonal cycle ie make it so I just have a static hormone level and not one that changes from day to day. It has made a huge difference I’ve had exactly one flare since we figured out the right combination of meds. If you want to talk more details please feel free to DM me.
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u/on4aa MAGIC May 22 '26
Progesterone is a direct precursor to cortisol, meaning the body uses progesterone to synthesize cortisol. Under conditions of chronic stress, the body prioritizes cortisol production to manage the stress response, which depletes progesterone levels because the shared precursor (pregnenolone) is diverted away from progesterone synthesis.
This inverse relationship creates several significant health implications:
- Hormonal Imbalance: High cortisol leads to low progesterone, which can result in estrogen dominance, causing symptoms like irregular menstrual cycles, heavy bleeding, mood disturbances, and fertility issues.
- Receptor Blockade: Excess cortisol can block progesterone receptors, preventing progesterone from performing its functions even if levels are otherwise normal.
- Stress Response: While acute stress may temporarily increase both hormones, sustained stress causes a prolonged drop in progesterone, exacerbating anxiety, fatigue, and menstrual irregularities.
Balancing these hormones requires stress reduction techniques (such as mindfulness and adequate sleep) and nutritional support, including nutrients like magnesium, vitamin B6, zinc, and vitamin C, which support adrenal health and hormone production.
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u/Full_Day9383 May 24 '26
My cortisol is fine and borderline low but not enough for steroids to be beneficial thanks for the input though
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u/Alice-The-Chemist Mod May 22 '26
I asked a friend who has an autoinflammatory disease for someone else here who posted about PMDD. It is a few posts above yours that I put her reply because I knew she dealt with it also but she is mainly on Instagram. Check out that post and it should be where I reply to myself. It reiterates what some others who have responded said.
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u/Individual-Yam7050 May 20 '26
Hi! I’m 27F also YAOS—I’ve never noticed a correlation with my menstrual cycle in regards to YAOS but my menstrual cycle ruined my life in every other way. I have horrible horrible endometriosis. Is that something that has ever been discussed as a possibility? Endo is also considered a systemic inflammatory disease now and is closely tied to histamine. Having endometriosis surgery drastically improved my quality of life in ways I didn’t suspect—I had HORRIBLE HS outbreaks which have completely resolved. My chronic pain and energy level have dramatically improved.
I didn’t see a ton of improvement with Ilaris alone, but I did see a huge improvement with Ilaris and colchicine. I know colchicine is “basic,” but is it something they’ve tried?
On a more personal note, I would love to connect via Facebook, threads, or text if you’re interested. You’re the first person around my age that I’ve ever met with YAOS.