I had an ultra sound done on my kidneys yesterday. As she was doing this (due to unexplained kidney pain) she said “endometriosis doesn’t show up with this “.
I actually knew that but I still wanted the test. Maybe it’s not endometriosis. I’ll know in a couple of weeks with results from my doctor .
I’m 65 and just to let you all know ……I was feeding it by taking a big amount of estradiol everyday …….without caring how old I am ……it made me feel younger and more sexual etc…….I was also in tremendous pain . It was intolerable. Long story short……I already wrote this but I’ll just write it again……a doctor who finally said “uh…..it doesn’t matter how old you are. If you have the roots ….you are feeding them”.
I went home and flushed the rest of my prescription down the toilet and all my pain on both sides and colon all around went away within about 2 months or less. I was so excited about that ……it is lying dormant . But maybe it’s something else with my kidneys because it didn’t help my back .
Anyway …….just reading different shares and I thought I would add that.
I needlessly suffered 40 years (and 2 operations) with endometriosis because I didn’t know it had roots . I was never clearly told and always rushed out ….and had NO IDEA estradiol was feeding my endometriosis.
💜💜💜💜to all of you.
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mimilover
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Endo doesn't have roots as such - it creates fibrosis as it progresses that infiltrates normal tissue and replaces it with diseased scar tissue which can become deep. This is often left in by unskilled gynaecologists. Often this can become non-progressive but the active endo can continue to grow.
Deep endo shows up very well on ultrasound but those in general gynaecology are only trained to look at the uterus and ovaries.
Oestradiol is required for it to progress but endo produces its own within its own cells and this is not affected by circulating levels in the blood. So HRT would be one potential source but in severe endo especially it is more likely that lesions are feeding themselves without need of HRT or the ovaries. Oestradiol only HRT is associated with recurrence and malignancy, but it seems that the exogenous oestradiol might trigger the endo cells to produce their own. So just be careful as stopping oestradiol medication is unlikely to stop deep endo from progressing. When I was in this scenario once I stopped the oestradiol HRT it rapidly became more progressive and I was finally found to have a huge complex mass with its own independent blood supply to feed itself that was thought to be end stage ovarian cancer assumed from a remnant. Fortunately it turned out to be the aggressive sub type associated with oestradiol only HRT.
So I would just urge to be cautious and not to assume that it has gone dormant - I would want an expert scan by someone trained in looking for deep endo.
Well that confused me . 💜thank you though. I know I must have a lot of scar tissue . I was already told that once . Like I said …… whatever it is…….it’s lying dormant so I don’t want to take any type of estrogen. Also if your uterus has been removed I was always told to NOT take progesterone. And that I should take promethium which I used to take but stopped that a long time ago and I need now to look this up . So thank you I am going to research this .so….. Yes maybe I was given the wrong info once again …….well I’m glad I had the kidney ultra sound . Anyway …..thanks .
Fantastic explanation. Add to that if you’ve had endo and are taking HRT it’s recommended, especially if you are getting echos, to use progesterone also even if you don’t bleed or have uterus. Body identical like Utagestan ( available on NHS ) is better tolerated by many . Unopposed oestrogen can be the troublemaker but stopping or zero oestrogen circulating is a real health risk. Frequently older women without uterus aren’t prescribed the progesterone and that can be the cause of imbalance and pain. We need both in balance. You are so right that huge ups and downs or fuelling of endo can be triggered by erratic and chaotic hormones that are a feature of peri and actual menopause. Dr Louise Newson did a good podcast on endo and HRT on her website that’s worth a close listen.
Hi I’m reading and researching and thanks for all your info . You’re smarter than all the doctors……. men and women …….and chiropractors (who obviously I didn’t need) but people are saying it must be that……..
Hi. You can still be on Estradiol HRT with endometriosis, you just need to have the progesterone part of HRT too as that helps prevent the Estradiol from flaring up the endometriosis. That way you can obtain all of the other health benefits of oestrogen.
Think you need to reevaluate the information you where given. Dr Louise Newson does great podcast going into this. She’s got a website full of useful info Newson Heath Clinic in Stratford. She’s got a whole section and podcasts on this very subject.
Yes I’ve been reading that promethium is a part of progesterone and also that I needed progesterone all along ……..I’m so so irritated for getting wrong info forever but hey………if I had lived several hundred years ago I’d have been dead in my 20’s . I’m sure of it . ……So I’ll look up the Dr. You’re talking about .
Yes, but it is now recommended that even if you’ve had your uterus removed you should be on a progesterone if you have a history of endometriosis. I’ve had a hysterectomy too but I’m on a body identical progesterone called Utrogestan as well as the Estradiol HRT. I initially started oestrogen only HRT after the hysterectomy and soon had a flare up of bowel endo symptoms. As I was researching HRT anyway I came across the up-to-date information about progesterone on the Balance-Menopause website. It’s a great site by a leading Menopause Doctor called Louise Newson. I mentioned it to my general doctor and she remembered recently doing a course and agreed that the advice has changed. It makes sense to me with progesterone being needed to keep the uterus lining healthy and endometriosis being uterine tissue. I’d definitely look into it and maybe consult a menopause specialist as the benefits of oestrogen replacement are huge and important for our future health. Best wishes
I had no female parts either which is why I was given HRT. No endo diagnosis at that time and a pristine pelvis. I was then diagnosed with endo for the first time at age 51 after around 4 years of oestradiol HRT - aggressive stage 4. Further excision at age 55. The reason healthy women don't have to take progesterone is that once the uterus is gone there is no risk of endometrial cancer, which it protects against. Oestradiol builds to endometrium. However, in women with a history of endo it is associated with a risk of any residual endometriotic cells building in the same way with the potential for recurrence/malignancy.
HiWell at this point at my age now …….it’s been such a shitty life of pain I sometimes hope to just get cancer . It’s been hell on earth .
I have called a specialist place and they told me the risks of cancer based on what I’d been told to do or not do for years . So taking estradiol without progesterone can give you cancer . I was just two days ago been told this .
I’m so over it .
Sorry to sound so negative.
It’s so sad I see all of these women in pain …….trying to solve this as I have all these years .
Hi, I understand your frustration. Women’s health care is very poor and so much incorrect and conflicting advice from health professionals. You won’t be at risk of uterine cancer if you no longer have a uterus so please don’t worry about that. You just ideally needed progesterone while you were on the oestrogen HRT to keep any possible remaining endometriosis under control. Although you said you feel better for not being on the oestrogen anymore just be aware that oestrogen helps protect our joints, heart and brain from future diseases. You can take oestrogen HRT again but just ask for natural progesterone too x
Yes, on the website: balance-menopause.com visit the section called ‘menopause library’ and put ‘endometriosis’ in the search box. It will bring up a fact sheet about endometriosis and HRT and there’s a podcast with Chris Mann and Louise Newson. That’s the best website as it’s updated constantly and really informative. Best wishes with it all
Welp one more doctor specialist. Thank you so much . I will research the progesterone that I have been told multiple times NOT to do ……….so this is frustrating to hear about combinations etc …..but I did research for 5 years what estrogen worked for me . Estradiol was the miracle . Synthetic plant . Welp . It had to have fed the endo Becaise all pain went away once I stopped taking it . All over stomach walls and colon area and ovary pelvic area . Anyway I know I’m the oldest one on here out of 60,000 women. So I’m honestly using a tens machine (it’s so great ) on my back and kidney area …….I’m sick to death of doctors . To be honest I think I’ve had it . I do really want to say though …….stopping estradiol stopped my pain . So again it’s just my back . It may be something else . Kidney endo is very rare (of course I was told ) and I’ll find a solution for my kidneys .
So on a positive note ……like I said ……estradiol caused me pain for years and stopped the pain when I went off of it .
I think it might be different for someone menopause aged…..I think progesterone is only for people how had uterus removed and haven’t reached menopause age….I’m not sure but that was my impression
That makes sense. Well……either way too late . Gosh I had my uterus taken out at 26 but didn’t need estrogen til 39 after second operation…….. and noticed signs of being estrogen hungry . I guess I’ll never know . At 39 several doctors told me NO PROGESTERONE without uterus. I feel bad now stating my story…….I don’t want anyone going thru what I did . Constant opinions from doctors(from nothing to “try doing this “ and paying out money for the sure thing .
I understand ur frustration with doctors I spent the last twenty years reporting my symptoms to doctors with no answers, i have been homebound the last ten years with my symptoms, I was finally diagnosed last March when I requested a hysterectomy because of blood clots size of my palm during my periods, that’s when I was diagnosed with adenomyosis and stage four endo. And still all the symptoms that the doctor said he didn’t think were endo related are the ones that went away from surgery (excruciating back pain in my lower left side that felt like when the dentist hits nerve with the drill, painful diarrhea every day that had started twenty years ago as constipation and diarrhea, and for two to three years I wasn’t able to wear a waist band I would wake with my stomach flat and any little bite of food my stomach would progressively bloat and by end of the day I looked nine months pregnant it would be so painful I could hardly breathe felt like my skin was goin to rip open cause it was so bloated. The only symptom that he did think was endo related was my bladder problems. All those symptoms stopped after surgery I still haven’t had any of the back pain and only get a small version of the bloating on bad endo pain days, the diarrhea was completely gone for three months then the bowel symptoms started again with alternating diarrhea and constipation every day and the doctor claims (even though my bowel was fused with adhesions and he had to fix that during surgery) that the bowel symptoms are not endo related he thinks ibs 🤦🏻♀️….so after the surgery the endo pains were still there and the doctor told me they would be from microscopic endo that wasn’t visible, now it was year since my surgery on March 26 and I have still had the monthly migraines on my period every month sometimes lasting three weeks a month and some back and pelvis pain, but this last period week I had pain like before the surgery where I can’t stand even with two Tylenol threes 😫 it felt like the worst period I’ve ever had but I dunno if it’s just cause it’s been a year since I had that kind of pain
Awww thank u 💜💜💜, ya it really does suck, I was aware the endo could come back after the surgery but I didn’t expect to still have endo pain immediately after surgery and I had no idea I was still going to have monthly cycles, I had really hoped the migraines would stop and I didn’t know I would have the exact same pain during my periods as I had before the hysterectomy 😢😢 only difference during my periods is I’m not losing massive blood every month which was scary …..after twenty years with no answers I was so hopeful my symptoms would be gone after the surgery 😢
Just saying, but I had my ovaries removed initially and was on Estrogen only hrt but had to take progesterone so that I still had a bleed to stop thickened uterus. Was intolerant to progesterone so had to have a full hysterectomy. Still couldn’t tolerate estrogel though so on nothing. Which isn’t great. I’m convinced something still growing though as have cyclical pain 6 years on and have pmt like symptoms every few weeks. Literally nothing left!
Now I’m reading promethium is a part of progesterone. So they’re right ……..what some women are saying about the HRT . If only I’d read all of this many many years ago . 💜💜💜💜
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Another bad week
I feel like I have Endometriosis but I’m not being listened to...
13 year old pain menstrual cycles 7 months 
Does it ever get any easier?
Fuming! 
