Suspected endometriosis - progesterone not helping...

[LadyRae]

@curious_anthro this sounds like an ovarian cyst to me too. Hopefully when you get in to the GP you'll get an ultrasound.

If it is, then they will probably want to put you on the pill or something. So then you will be back here learning more about estrogen dominance. People respond differently, dramatically differently, to progesterone so I'm not exactly sure what to say since you've already been taking it. Next I would focus on cleaning up your gut and possible endotoxemia...

 

[frannybananny]

That is awful! I am sorry you had to endure that. How do you feel these days? Has the endo returned?

Lupron seems like a very powerful drug. Do you think it interfered with trying to get pregnant again? I am in the UK so not even sure what the standard is for treating endo here but even just getting a doctor to listen to you is really difficult.

Indeed, Lupron is a very strong drug and not for everyone. I do not know if it interfered with trying to get pregnant again but I did start having periods again. My husband also had some fertility problems so it could have been that. Many many years later when I was having certain pains in my ovaries I could tell the cysts were back and went to see my gyno, a very wonderful smart lady. After an ultrasound and I told her of my previous experience and how the Lupron got rid of the remaining cysts and endo she asked me if I wanted to try that again but that it might put me into menopause. I said sure!!! (I was ready for menopause and late). So we did the injections again..... all pain stopped, I went into menopause and that was that. My hot flashes were minimal, a year and a half of tolerable sweaty moments and all was well... knock on wood. I must say about the Lupron that it not only dried up the endo but took away any painful cystic areas in my breasts, erased all the bumps and lumps and I felt good about that also since breast cancer runs in my family. You can always private message me if you have any personal questions. Sorry if I have offended any of the males here by talking about female issues.

 

[Herbie]

Ray said something like taking huge dose of progesterone can heal a cyst.

I think if in doubt take more progesterone.

 

[curious_anthro]

Indeed, Lupron is a very strong drug and not for everyone. I do not know if it interfered with trying to get pregnant again but I did start having periods again. My husband also had some fertility problems so it could have been that. Many many years later when I was having certain pains in my ovaries I could tell the cysts were back and went to see my gyno, a very wonderful smart lady. After an ultrasound and I told her of my previous experience and how the Lupron got rid of the remaining cysts and endo she asked me if I wanted to try that again but that it might put me into menopause. I said sure!!! (I was ready for menopause and late). So we did the injections again..... all pain stopped, I went into menopause and that was that. My hot flashes were minimal, a year and a half of tolerable sweaty moments and all was well... knock on wood. I must say about the Lupron that it not only dried up the endo but took away any painful cystic areas in my breasts, erased all the bumps and lumps and I felt good about that also since breast cancer runs in my family. You can always private message me if you have any personal questions. Sorry if I have offended any of the males here by talking about female issues.

Thank you for the information!

I wouldn't worry about offending males as this is posted under the female issues thread

 

[curious_anthro]

Ray said something like taking huge dose of progesterone can heal a cyst.

I think if in doubt take more progesterone.

Well this is sort of where I am getting confused, I have taken up to 400 mg (topical) a day during the luteal phase and, even taking into consideration I am absorbing maybe 20% of that, its still a high dose.

 

[curious_anthro]

@curious_anthro this sounds like an ovarian cyst to me too. Hopefully when you get in to the GP you'll get an ultrasound.

If it is, then they will probably want to put you on the pill or something. So then you will be back here learning more about estrogen dominance. People respond differently, dramatically differently, to progesterone so I'm not exactly sure what to say since you've already been taking it. Next I would focus on cleaning up your gut and possible endotoxemia...

After further investigation I think it perhaps was a burst cyst! The progesterone seems to help other issues (sleep + mood), but not this...

 

[Herbie]

Well this is sort of where I am getting confused, I have taken up to 400 mg (topical) a day during the luteal phase and, even taking into consideration I am absorbing maybe 20% of that, its still a high dose.

Have you tried that under the tongue?

 

[curious_anthro]

Have you tried that under the tongue?

I used progest-e under the tongue for a while before switching to topical Natpro cream. I do wonder if its worth trying it again though!

 

[des yeux]

Well this is sort of where I am getting confused, I have taken up to 400 mg (topical) a day during the luteal phase and, even taking into consideration I am absorbing maybe 20% of that, its still a high dose.

Have you looked into taking enough progesterone to nearly or completely suppress ovulation? 400mg topical isn't enough for endometriosis. One clinical paper from University of British Columbia recommends 300 to 400 mg oral progesterone per day for 14 days per cycle, starting day 14 if your cycle is 27+ days. I attached it to this reply. I would go even further and suppress ovulation completely for a month or two if you are in pain.

 

[des yeux]

Indeed, Lupron is a very strong drug and not for everyone. I do not know if it interfered with trying to get pregnant again but I did start having periods again. My husband also had some fertility problems so it could have been that. Many many years later when I was having certain pains in my ovaries I could tell the cysts were back and went to see my gyno, a very wonderful smart lady. After an ultrasound and I told her of my previous experience and how the Lupron got rid of the remaining cysts and endo she asked me if I wanted to try that again but that it might put me into menopause. I said sure!!! (I was ready for menopause and late). So we did the injections again..... all pain stopped, I went into menopause and that was that. My hot flashes were minimal, a year and a half of tolerable sweaty moments and all was well... knock on wood. I must say about the Lupron that it not only dried up the endo but took away any painful cystic areas in my breasts, erased all the bumps and lumps and I felt good about that also since breast cancer runs in my family. You can always private message me if you have any personal questions. Sorry if I have offended any of the males here by talking about female issues.

I know it's in the past and I wish you continual relief from pain but I don't think it's safe to recommend Lupron to anyone. There are far safer alternatives to recommend that Ray mentioned. Here is a response from him about testicular cancer (something Lupron is used for):

[Aspirin prior to surgery? (testicular cancer)] If vitamin K is used generously, aspirin wouldn’t be likely to cause a bleeding problem. Progesterone could be used to lower luteinizing hormone before surgery, if that’s high. I think tetracycline (or a derivative) would be helpful to use with the aspirin. It’s important to check thyroid function and vitamin D.

The fact that it put you into menopause is alone very concerning. As Ray mentioned in his writing, menopause is not due to 'running out of eggs' but the inability of the ovaries. In fact it's a failure to produce functional corpus luteum and progesterone that leads to menopause. From Ray's article "Hot flashes, energy, and aging":

Starting in the 1940s, the doctrine that menopause is the result of changes in the ovaries, involving a depletion of eggs and an associated loss of estrogen production, was widely taught to medical students. By the 1970s, the taboo against discussing menopause publicly was fading, and the mass media began teaching the public that hot flashes are the result of an estrogen deficiency, and that "estrogen replacement" is the most appropriate and effective treatment, and in the next 20 years almost half the women in the US began taking it around the time of menopause. This practice became routine at a time when "evidence based medicine" was being promoted as a new standard, but there was no evidence that women experiencing hot flashes were deficient in estrogen (in fact, there was evidence that they weren't), and there was evidence that hot flashes began when the first menstrual period was missed, which coincided with, and resulted from, a failure to produce a functional corpus luteum, preventing the production of a normal amount of progesterone. But the silly old doctrine of deficiency is often restated by professors, as if there was no doubt about it (for example, Rance, 2009; Bhattacharya and Keating, 2012).

This extremely persistent disregard for important evidence about the nature of menopause and its symptoms was guided by the estrogen industry, which began in the 1930s to call estrogen "the female hormone," disregarding the facts about the biological roles of estrogen and progesterone, because chemicals with estrogenic effects were numerous and cheap, while progesterone was expensive, and had no synthetic equivalents. At the time the pharmaceutical industry began promoting estrogen as the female hormone to prevent miscarriage, it was already well known that it could produce abortion, as well as causing inflammation and cancer, and some of the most famous estrogen researchers were warning of its multiple dangers in the 1930s.

I remember reading somewhere that Low dose Naltrexone can be used to restart a menstrual cycle, but I don't have a reference.

 

[curious_anthro]

@des yeux I appreciate your input! I think I might try high dose oral progest-e and see if that makes a difference. It can't hurt anyway.

 

[frannybananny]

I know it's in the past and I wish you continual relief from pain but I don't think it's safe to recommend Lupron to anyone. There are far safer alternatives to recommend that Ray mentioned. Here is a response from him about testicular cancer (something Lupron is used for):


The fact that it put you into menopause is alone very concerning. As Ray mentioned in his writing, menopause is not due to 'running out of eggs' but the inability of the ovaries. In fact it's a failure to produce functional corpus luteum and progesterone that leads to menopause. From Ray's article "Hot flashes, energy, and aging":




I remember reading somewhere that Low dose Naltrexone can be used to restart a menstrual cycle, but I don't have a reference.

I did not recommend Lupronn to anyone, in fact I said it was NOT for everyone and I merely recounted my own experience. For me as an older woman when the ovarian cysts reoccurred a second time after 20 years, I was ready to take the Lupron again rather than go through a very painful debillitating surgery for the second time. I was very educated on the subject and encourage everyone to do their own research and due diligance and make their own decisions.

 

[teds]

I think I may have endometriosis despite using large amounts of progesterone! I am still waiting for a GP appointment but from my last experience, I do not have faith I will be taken seriously. This is the second month I have had sudden onset of excruciating pain on day 1 of my period - like the worst pain I have ever felt and its localised to my ovary area primarily on one side. It is the type of pain where you cannot think about anything else, makes me sweaty and want to vomit. I do not think its appendicitis, especially as it goes away after day 1 and its associated with menstruation. The last time it happened, I actually called the non-emergency line only to be told 'you know periods can be painful right? Take some co-codamol'. The NHS is USELESS unless you are actually about to die... even then...

Everything I read online, especially by @haidut , says this is estrogen driven and progesterone should help but I have been taking huge amounts of progesterone for months??? I have tried Progest-E but I feel better on a topical cream (its bioidentical, not progestin). I also take occasional cypro, aspirin and estroban.

Anyone have any thoughts as to what could be going on?! Or anything else I should try?

Hi @curious_anthro - how are you going with your process? I know you’ve been given quite bit of information here. Lowering estrogen isn’t a simple process if just eating good food and maybe taking some progesterone.. whoever said you could do that in 7 months possibly hasn’t read the very large portion of this forum content.. anyway, especially for a woman, the estrogen will be stored in the fat so if you have any then you’ve got some waiting for you! It’s quite frustrating. Also, progesterone does not appear to ‘shrink’ the endometrioma which may actually be what’s on your ovary as opposed to a fluid cyst or a dermoid cyst (which I believe also won’t be shrunk by using large doses of progesterone)… I’ve looked at pubmed and see some studies on aspirin directly injected into endo lesions (rabbits and rats I think only) but no hormonal intervention appears to get rid of the lesions themselves- although lowering estrogen and following Dr Peat’s suggestions are likely the best way to stop it developing further… when the endo becomes invested in bowel/bladder etc its obviously kore complicated. The reality is that the pill/contraceptive is just masking a bugger problem for us. Estrogen!!!! So so tricky! I hope you’re doing well and update us when/if you want to.

 

[curious_anthro]

Hi @curious_anthro - how are you going with your process? I know you’ve been given quite bit of information here. Lowering estrogen isn’t a simple process if just eating good food and maybe taking some progesterone.. whoever said you could do that in 7 months possibly hasn’t read the very large portion of this forum content.. anyway, especially for a woman, the estrogen will be stored in the fat so if you have any then you’ve got some waiting for you! It’s quite frustrating. Also, progesterone does not appear to ‘shrink’ the endometrioma which may actually be what’s on your ovary as opposed to a fluid cyst or a dermoid cyst (which I believe also won’t be shrunk by using large doses of progesterone)… I’ve looked at pubmed and see some studies on aspirin directly injected into endo lesions (rabbits and rats I think only) but no hormonal intervention appears to get rid of the lesions themselves- although lowering estrogen and following Dr Peat’s suggestions are likely the best way to stop it developing further… when the endo becomes invested in bowel/bladder etc its obviously kore complicated. The reality is that the pill/contraceptive is just masking a bugger problem for us. Estrogen!!!! So so tricky! I hope you’re doing well and update us when/if you want to.

Thanks for such a lovely message!

Perhaps you are right re fat storage. I have some incredibly stubborn fat/cellulite on my hips and thighs that I have never been able to budge, I am sure there is a lot of estrogen still knocking around in my tissues.

I recently found a bit of relief switching from topical Natpro progesterone cream to Progest-e. Has not helped acne or other symptoms but my last period was not too bad. I found I have not needed to use as high of a dose, but I wonder if that is because I have been using progesterone for a while now so my needs have decreased.

Interestingly, I finally got my GP to listen to me and she ordered an intravaginal ultrasound and blood test. I am waiting for the blood test still but the scan revealed cysts, in particular a few 'nabothian' cysts? They did not seem worried about it (are they ever unless you are dying?) and did not really offer any further information.

Have not had any further revelations about what to do next but maybe the blood test results will help (depending on what they ordered).