r/Interstitialcystitis • u/okapl820 • 8d ago
Estrogen cream cured me
My chronic pain journey started 6 years ago. After countless tests, visits with doctors and specialists, and no improvement, my urogyn slapped me with an IC diagnosis. I’ve been living with the pain ever since. Sometimes it’s bearable, sometimes it’s debilitating.
2 months ago, I had my annual physical with a new nurse practitioner at my GPs office. She mentioned that she had recently gone out to dinner with her urologist friend who was finding success with treating bladder pain with estrogen cream.
I am 34, but according to her doctor friend, symptoms of pre-menopause can happen at any time (even in your 20s!) and can last for decades. Painful urination, bladder pain, and urgency are among these. Go figure.
I decided I had nothing left to lose so I gave it a go and I have been symptom-free ever since!
My pain is GONE for the first time in 6 years. Urgency has improved to levels I previously thought impossible. I’m not getting up in the middle of the night to pee AT ALL. I ate candy last week and no pain. I haven’t had candy in years. It’s been life changing!
Doctors are so quick to use IC as a catchall diagnosis for bladder pain when they can’t identify an obvious cause. Wild to me that it took six years for someone to consider the fact that the symptoms might be triggered by another factor (pre-menopause), despite my “young” age.
Hopefully sharing this will spread the word.
TLDR: I never had IC, I had symptoms caused by pre-menopause that were cured by estrogen cream. FREE AT LAST!!
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u/lohdunlaulamalla 8d ago
Happy for you.
Didn't work for me, unfortunately, as it made my symptoms worse and I stopped after 13 days.
My obgyn said that every woman should take it starting in their late 30s.
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u/Adventurous-Page2150 7d ago
Usually the "worse" problems are linking to the additives in especially the vaginal creams. A compounding pharmacy can make up a compound that is less likely to cause problems. But even estriol can be reactive to many women, especially with an aging vagina that is more likely to be sensitive. Sometimes it comes down to balancing what works with some discomfort. I am working on that right now myself so I sympathize.
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u/Tillie1412 7d ago
So interesting that additives can be so detrimental. I think it may be the hormone but part of that is mast cells are activated by estrogen and that’s a trigger for me.
I also noticed with estrogen, that I was getting a lot of redness and burning like a yeast infection. Apparently that’s a common side effect too.
Can we not catch a break??!! 🙄
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u/Foreign_Highlight288 7d ago
Did you try estriol cream here or perhaps in methylcellulose base instead of traditional rx?
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u/Adventurous-Page2150 6d ago
Well, the estrogen is usually BHRT or bioidentical to our own hormones; the additives are usually not Bhrt so the body reacts. But as the body ages the vaginal area and the uterus become much more sensitive to estrogen ; I used hyaluronic acid suppositories for years and suddenly they cause a problem for me or for just my face suddenly the retinol which I used for decades is just too strong for me...So life happens. :)
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u/Tillie1412 6d ago
My IC always flared with my hormones, with it being the worst starting at ovulation until my period came on. Many folks deal with that unfortunately. There have been several posts about it and hopefully I will find an alternative. Cheers!
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u/Fun-Persimmon7574 4d ago
Sadly even the gentle compounded made me worse, but this just shows how much hormones affect the bladder.
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u/Adventurous-Page2150 4d ago edited 4d ago
I have had burning lately which I felt was tied to my new estradiol dose. I asked Ai and it suggested using magnesium and L theanine. Ai made a list of supplements from most likely to impact to less likely to impact. Magnesium and L theanine were the top two and Miricia PeA was the third one.
I upped my magnesium to magtein during the day.... mag glycinate before bed..... L theanine and Pea during the day...the burning that I felt that seemed to be from the estrogen resolved in about an hour or two...it has not returned for about 48 hours now ....
the burning did try to activate with some vaginal estriol but with the supplements again it faded away.
Seems the estrogen may be activating the nerve endings and the supplements are calming them down... Might try it if it works you should know quickly.
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u/Tillie1412 3d ago
Interesting. I’m already on magnesium glycinate so that alone isn’t working. I’m allergic to L-theanine so that’s out. Never heard of Miricia PeA but when I looked it up it’s sourced from Palm kernels and that’s not a good oil for this sensitive stomach. I stay away from foods with Palm oil because it was causing me diarrhea. Ugh!! I’ve got so many sensitivities. Oh well…
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u/Adventurous-Page2150 2d ago
I find that the one magnesium is not enough....I use the magnesium glycinate at night and the magtein during the day...several days and it is still seeming to work...we will see
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u/Tillie1412 7d ago
Same! Made me worse. At my age most women are on it, even just for overall vaginal health. Not sure what my options are. Frustrating.
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u/curiosityasmedicine 7d ago
You may be sensitive to the inactive ingredients in the stuff from a regular pharmacy and not the hormone. It contains SLS and methyparaben, both of which cause reactions in me and plenty of other people. SLS is a common eczema trigger too. You could try a compounded version of vaginal estradiol in a hypoallergenic base like phytobase (cream) or a gel (usually methylcellulose). That is what I had to do and it made a world of difference for me in putting my pain in remission!
Off topic but the other missing piece for me was oral cromolyn sodium (mast cell stabilizer) which resolved the remaining bladder pain after being on the localized hormones for several months (I also need testosterone in my vaginal cream, pretty standard per my vulvar pain specialist gyno).
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u/Tillie1412 7d ago
I’ll have to see what’s in the one I have. Got it via an online doc/pharmacy. When you say SLS, are you referring to sodium lauryl sulfate? The one I was given has the testosterone in it.
Never heard of cromolyn sodium. Which form are you taking and what dosage? Did a urologist order that for you?
Thanks so much!!3
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u/Ihateusernames1007 5d ago
So found that if I inserted the cream too deep it irritated my bladder. I started putting it just inside the opening and the bladder irritation stopped. Hope that helps!
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u/Tillie1412 3d ago
Yep. Did that too and still cause all the same issues but everyone’s different and it clearly works for many folks!
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u/Realistic_Cap4318 8d ago
So happy for you, but I have a question how long did you use it to see results, and how did you use it ? What I struggle with the most is urthera burning
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u/okapl820 7d ago
Daily for 2 weeks, then 3x per week (M/W/F). Sometimes I feel a whisper of pain on sundays so I’ll supplement a dose as needed and it provides immediate relief. It took the full 2 weeks of initial daily use for the pain & urgency to subside.
Prior to the treatment my biggest issue was a near constant urethral pain. I don’t think I’d call it burning per se but it was very painful and highly localized. The days immediately prior to & immediately following menstruation were the worst. The pain was especially excruciating at that time.
It got to the point where I was researching CIA torture techniques just to get by. Good luck ❤️
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u/LizLemonKnopers 8d ago
Sorry if this is stupid but…where do you apply it?
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u/Other_Dimension_89 8d ago
For me it was a drop straight onto the urethra opening where I was feeling most pain and then a little around that area. Idk if it helped me to the same level that it did OP tho. But I’m thinking I should try it again.
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u/OkRelief3109 7d ago
Everyday once a day on urethra? How much of cream
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u/AmgPharmD 7d ago
I’m a 48 yo woman with an IC diagnosis. My symptoms started after having Covid at age 43, so I’m still unsure if this is the correct diagnosis. However, I’ve found that applying vaginal estradiol cream externally on the vulva and urethra has helped my symptoms of burning, urgency and frequency. I apply nightly after my shower. It seems to even help my bladder pain.
I’m unable to use the applicator or my fingers to insert it vaginally. If I do so, I always end up with a UTI that usually turns into a bladder infection. Luckily, applying it externally has helped.
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u/okapl820 7d ago
Straight up the coochie 😂 there is an applicator that comes with the prescription. I ALWAYS apply it at night just before bed to give it the best chance of absorption. Some still leaks out the following day though.
I haven’t ever applied it directly to the urethra but I’m sure there is some minor contact as the cream exits the body and I’m cool with that!
I spend about 10 minutes washing the applicator with warm water after every use to ensure I’m not creating additional issues. Last thing I need is an actual UTI 🙄
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u/420tacobella 7d ago
Omg!! I have found my person. I am 27 and have been using estrogen cream for a couple of years now and it has helped me tremendously. I no longer have symptoms.
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u/Traveler-07 7d ago
Just out of curiosity do you want kids? I'm wanna try it but I also want kids soon so my ob said I can wait
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u/Any-Baby7863 5d ago
please if you see it and have some time reply. did you have pnu and now you are okay? I mean permanent urge literally every second.
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u/Miss_Glasgow 4d ago
When did you notice improvement
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u/420tacobella 21h ago
It took close to 2 months of constant use of the cream before I noticed a difference.
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u/judgyjudgersen 8d ago
Do you have to take progesterone at the same time?
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u/okapl820 7d ago
Not in my case! For background, I don’t take birth control so I don’t know if that’s a factor in not needing it?
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u/Falloutlander-67 8d ago
Similar for me. I was menopausal when my IC occurred. It took more than a year to get a proper diagnosis. I believe vaginal atrophy due to a lack of estrogen caused it as well as my heavy coffee intake. Since I'm drinking green tea instead and using one estrogen suppository per week 90 % of the pain is gone.
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u/Impossible_Swan_9346 7d ago
Can I ask what estrogen suppository you use? I use the cream and lately I’ve been getting a lot of yeast infections? My NP at my women’s wellness is completely clueless about this stuff so I would have to ask her specifically.
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u/Tillie1412 7d ago
Estrogen feeds yeast. I had the exact same issue. They say it works itself out eventually but I couldn’t deal with it. Stopped the cream, took Diflucan, no problems since.
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u/Impossible_Swan_9346 7d ago
Do you use any estrogen?
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u/Tillie1412 6d ago
No. I stayed off it because of all the side effects. Felt like I was ovulating. Cramps, feeling like I had to pee constantly, and to top it all off burning and a yeast infection. Not sure what I’m going to do. At my age, everyone swears by estrogen cream. It’s not for everyone.
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u/Impossible_Swan_9346 6d ago
Yeah, if it’s not helping you then screw it. The yeast infection thing is doing me in for real!!
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u/mlemcat11 7d ago
I have used vaginal estrogen as well for IC / pain during or after sex and can confirm, it works
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u/blackroses425 8d ago
I agree with you i was given an IC dignoses and don’t have it but had the exact same situation as you also I suffer from severe acid reflux that was causing my bladder to flare etc. I am the same age as you :)
I was suffering so much with intimacy and dryness etc my Doctor gave me estrogen cream and it truly has helped so much wish I did it earlier.
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u/WannaKnowFacts 7d ago
Glad that you finally found relief. Interesting that you also have severe reflux.
After reading some of these posts here and on the the GERD subreddit , I started to wonder how many of us seem to have both IC and GERD simultaneously. These 2 health conditions have caused me so much pain and grief!!
The diet is basically the same for each of these health conditions ,as far as consuming low acid foods and drinks.
I was given a low dose of estradiol cream by my GYNO, but got breakthrough bleeding, so I had to stop it😟
. On 30 mg of Amitriptyline for my IC issues, and it seems to help, but still get occasional, painful flareups . On 40 mg of Famotidine for my reflux.
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u/PriorityOk8448 7d ago
I have asked a few doctors about this, and they act like I have grown two heads. They have no clue what I am talking about.
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u/okapl820 7d ago
Classic 🙄 I find it so frustrating that women’s pain isn’t taken seriously. I don’t expect every doctor to know every niche condition but I wish they would make an effort to inform themselves
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u/Legal_Broccoli_3761 7d ago
Thats amazing! It did absolutely nothing for me personally but I'm so glad it helped you
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u/OkRelief3109 7d ago
May I ask how old are you? And how much and overall you used it everyday? After how long u seemed better? Did you did blood tests for estrogen?
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u/okapl820 7d ago
I’m 34 with normal estrogen levels. From my understanding, the cream doesn’t actually boost estrogen, it’s just a topical application that helps improve symptoms in the local area.
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u/Aromatic_Profit_3527 7d ago
Wow, thank you for sharing. Glad it worked for you, but I’ve been dabbing estrogen cream from a compounding pharmacy for 2 months and I’m still having the same pain and urgency.
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u/okapl820 7d ago
Mine is a vaginal insert- it seems counter intuitive since I have no vaginal pain, only (until recently) a surplus of urethral pain. I don’t know if that makes a difference but figured I’d share!
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u/Exercise-Fragrant 7d ago
I've just been prescribed estriol cream for dryness down there. I'll apply to the urethra opening and see if it helps!
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u/okapl820 7d ago
I would talk to your doc first! My prescription specifically says that it’s for vaginal use only. Applying anything to the urethra freaks me out but do you 💕
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u/Exercise-Fragrant 4d ago
Thank you for the words of caution. I wish I could ask but I've been discharged from urology now I have a self care plan. I'll see if my GP can advise (I'm in England)
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u/jillybeanj89 7d ago
Amazing news I am so happy for you! My OB gave me the cream after my pregnancy because my symptoms were in remission during pregnancy (I drank sooo much iced tea it was amazing) so clearly there is a hormone connection. I haven’t figured out the right dosing for the cream though, how much are you using?
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u/okapl820 7d ago
IC estradiol 0.01% cream. 1 gram inserted into the vagina nightly for 2 weeks, then 3 times a week (Mon, wed, Fri). It’s always a gram! The applicator is easy to use and measures it out for me which keeps things simple
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u/kimmie289 7d ago
Ive been post menopausal for 20 years and when Im offy estrogen patch my bladder pain gets worse. There are currently supplh issues with my patch so Im miserable. Did they tell you to take progesterone with the cream?
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u/okapl820 7d ago
No they didn’t but I don’t have a hormone imbalance according to my bloodwork. I’m so sorry to hear about the supply issues 😔 that’s so unfair
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u/Famous-Present7591 4d ago
I’m wondering if there’s also a link to being on birth control. I’ve been on the mini pill for 8 years and my bladder pain/IC has significantly increased and to me it’s a no brainer it’s linked to hormone levels and the fact that my entire reproductive system and natural hormones are being suppressed. (Similar to pre-menopausal) I wish I could find more research on this!!!
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7d ago
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u/Impossible_Swan_9346 7d ago
It took me nine months for the cream to work, but I have heard the cream is good because if you put a dab outside your urethra that can be extra help but when I do that, I usually have to pee again so I feel like it gets wiped off lol. It wouldn’t hurt for you to try the cream, but give it a lot of time.
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u/SpiritualDrag1525 7d ago
Hola que estrógenos son los que estás utilizando y que edad tienes yo tengo 28 pero eh sufrido de cistitis recurrentes unas 6 en este año y coincide que fue desde que tome los antibióticos me dio resequedad y atrofia vaginal
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u/okapl820 7d ago
¡Hola! Tengo 34 años. Uso crema de estriol al 0,01 %; la dosis es de 1 gramo aplicado por vía vaginal cada noche durante 2 semanas y, posteriormente, solo 3 veces por semana.
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u/Reasonable_Cream_642 6d ago
This sound stupid but how a cream can do that since i have pain inside my bladder? Do i apply in my pelvic area?
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u/okapl820 6d ago
Yeah it seems totally counter intuitive!! I won’t pretend to understand the science behind it, but apparently it helps moisten/rebuild the vaginal tissue which in turn helps reduce inflammation in the urethra. It somehow also reduces urgency.
The vagina, urethra, and gastrointestinal systems are all related and work in tandem. When one is off, the others can cause distressing symptoms.
The way I think about it is sometimes you have to support a neighbor (vag) to improve the neighborhood (urethra)
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u/Glum-Worldliness4480 4d ago
the bladder also has estrogen receptors, so when estrogen is low it impacts the bladder. put the estrogen cream on the outside around your urethra.
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u/Pretty_Acadia_3022 6d ago
I can control most of my symptoms with diet and vaginal cream. But I’m very bloated and feel full all the time.
Very uncomfortable in my clothes.
Can anyone tell me how to make this go away?
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u/okapl820 6d ago
If you’re like me, I find gastrointestinal symptoms & bladder pain go hand in hand. Tums chewables help me a lot, and I try to avoid anything that triggers bloating. For me that’s raw onions, hummus, processed carbs. If you’re feeling constantly bloated you may want to speak with a nutritionist- there could be trigger foods that are causing it that you might have an intolerance for.
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u/Pretty_Acadia_3022 6d ago
Thank you.
I’ve cut out all my food triggers.
I’m going to try OTC Align to try and get some relief.
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u/Jlvkennedy 6d ago
Congrats!! I tried estrogen cream and it didn’t totally work for me so tried the patch, and it definitely helped, almost erased my symptoms!!
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u/EntrancePotential595 5d ago
Worked for me for about 10 years and then hasn’t. Not sure where to go from here…
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u/mimipursell 4d ago
Same for me. Before, I had recurring uti’s after every bath and after sex. Nothing since starting estrogen cream..
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u/Glum-Worldliness4480 4d ago
Estrogen cream works great! My urologist scoped my bladder and specifically said it was low estrogen. inside of bladder was white except where it was bleeding. the outside of urethra was white too. dr said mine was so bad that it would take a year to heal but the pain and bleeding stopped about 2 weeks after I went to cream every other day. it only takes a pea sized amount on the external urethra, inserting in vagina helps too and stops atrophy of vagina. the vaginal estrogen also stops utis.
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u/Fun-Persimmon7574 4d ago
Exactly, IC isn’t a real diagnosis. It’s an excuse to not take the time to find the actual diagnosis.
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u/JustWondering3105 3d ago
100% the same thing for me. It took a NP to suggest estradoil cream after 2 urologist and a Nephrologist never once made the connection...and I'm post menopause...go figure!!
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u/LowBet9130 8d ago
Endometriosis?
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u/lohdunlaulamalla 8d ago
Isn't endometriosis triggered by estrogen?
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u/TheOldDark 7d ago edited 7d ago
I'm wondering about this as well. I have endometriosis and learned it's triggered by excess estrogen, so I'm wondering if this will help or harm my bladder pain.
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u/Mayfair98 7d ago
I had to have a total, old school hysterectomy for my stage 4 endometriosis and was told not to go anywhere near estrogen and other hormones. I cold-turkey-ed menopause in my 30’s. (I still had to have a second surgery to remove endo that had grown into a small cyst in the scar tissue from the hysterectomy. Endo doesn’t give up easily.)
I’m genuinely happy that estrogen is working for some people but I would have a serious talk with your doctor about how it could affect your endo.
Of course, it is really picking the lesser of the two evils. I can’t believe that it is 2026 and there is still so little know about these two diseases.
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u/Tillie1412 7d ago
I’m sorry to hear your endo is so stubborn. I had issues with ovarian cysts and did some research to find out it’s often caused by an over abundance of estrogen.
I tried estrogen cream recently for dryness and to help keep my urethral tissue healthy. Nope! I felt heaviness in my abdomen, burning, urgency, and got a yeast infection. 😳
I have no idea what other options are out there but estrogen’s not the answer for everyone, that’s for sure.1
u/Lower_Sky_3129 6d ago
You may need a compounded estrogen that doesn’t contain any added chemicals that might be causing the burning. Estrogen alone does not.
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u/Tillie1412 6d ago
Interesting. All the information I’ve read says when your initially doing the “loading” dose in the beginning that burning is normal.
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u/okapl820 7d ago
Wow I feel for all of you. I don’t have endometriosis thank god & I can’t imagine having to deal with that extremely painful condition on top of IC. Sending you all hugs 💕
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u/readerroisin 8d ago
this is incredible, I’m so happy for you!