Endometriosis/questions live tv should hear about.

[nikkimatt2019]

I just had some very interesting questions. If endometriosis starts of with scarring in your body and hormones. But in pregnancy it stops and slows the endometriosis down if they ran some tests and put all together they could come up with some solutions or at least part of treatment. I think they should take tests and blood samples from each stage of the endometriosis as well as pregnancy samples from blood and tissue that way they should be able to find a permanent cure or maybe treatment to at least stop or slow it down. I'm not a perfectional or a brainy person but I think if they at least gave that a try theres a chance and possibly they could save many of us womens bodys, and many of are organs and bowels. They can prevent or at least slow down all this damage that it's doing to our bodies while they are still testing or trying to find a treatment. Atm it just feels like they ain't doing enough for endometriosis people!!! That's personally my opinion other wise alot of us wont or wouldnt be suffering.

[635703]

I hear ya! Somebody do something!!! Or are we still spending ALL the money on penile dysfunctional errection research 🤦🏻‍♀️🙄

[nikkimatt2019 in reply to 635703]

Exactly. They spend money on everything else. Even help other illnesses but with endometriosis they ain't taking it seriously. They should focus and at least make an effort for us women. It's not being horrible but tbh if it wasnt for us female there wouldnt b much men or matter fact much people in this world.

[635703 in reply to nikkimatt2019]

🫶🏻😆 true.

[Lindle]

Unfortunately pregnancy doesn't cure endo. In some it might slow progression due to the change in hormone balance away from unopposed oestradiol, perhaps in the milder cases. But endo produces its own oestradiol within its own cells which isn't affected by circulating hormones and so can still progress during pregnancy. There is already a treatment based on hormones during pregnancy - the combined pill.

[Tropic]

I agree. When I was pregnant I didn’t have any trouble with endo at all! It was amazing!!

[BloomingMarvellous]

This pause/partial relief in pregnancy is a signpost that many researchers feel is a strong indicator that endometriosis is an autoimmune disease process. As such understanding the immune dysfunction that’s underway is a useful direction to keep travelling. Hormones are only a part of that process and not the whole story. Glad that you are enjoying a break from the pain 💝

[Lindle in reply to BloomingMarvellous]

I believe endo is autoimmune but haven't come across pregnancy being an indicator - please could you link the articles as it will be interesting to see what researchers have found.

[BloomingMarvellous in reply to Lindle]

There are a few articles not necessarily directly referring to endo that discuss the mechanisms involved with autoimmune and immune dysregulation either down regulating or “switching off “ in pregnancy as a protective mechanism of the pregnancy and foetus. Exactly how that works is a matter of some debate some querying whether it’s a rise in cortisol levels or not. Whilst the shift in progesterone and oestrogen is part of the equation it’s not seen as the whole story at all as there are significant rises in both. Technically if the progesterone/ oestrogen balance were the absolute root of endo this wouldn’t be entirely logical so they think there are other elements at play here. Not every endo case responds well to progesterone or combination or GNRH antagonists whereas for others they are the bees knees. Again unknowns.

However, what is common is the broad observation that autoimmune issues often receed in pregnancy and a factor in the likelihood of an illness having an autoimmune element for a number of disciplines. It’s not absolute as a declaration but a loose association/working hypothesis - with the raising of immune dysregulation in regards to endo and adenomyosis this has been mooted as an added possibility. You’ll have to do your own digging as the references - I’ve not kept tucked away handy as I do a lot of reading of research materials for my own understanding. We need more clarity from the research field !

From a personal perspective pregnancy has been the one time am free of symptoms and felt utterly normal so wouldn’t be surprised when the mechanics are worked through and a positive association drawn. Am sure that’s the case for many of us. Until that day we remain in limbo land.

[Lindle in reply to BloomingMarvellous]

Yes we are. I'm not able to research at the moment as I am away with just my phone and not much time but when I did research this I read about natural autoimmunity that comes into play when required in certain situation as a protective mechanism. I assume this occurs in males too and given that pregnancy is a normal process requiring a shift in hormones to actually control the pregnancy process I'm not convinced that natural autoimmunity associated with certain normal processes would have a protective effect on already existing disease-related autoimmunity. But maybe there is some science behind it. I'll look forward to looking into it when time allows.

[BloomingMarvellous in reply to Lindle]

Immune regulation is a whole huge ball park of semi knowledge on shifting sands. The possible routes of dysregulation myriad and apparently labyrinthine. Again queries about layers of issues triggering disease process. Which makes sense with the probability that endometriosis has many types rather than a singular mechanism to get to a similar place. Understanding it’s variable nature hopefully will lead to better treatments and targeting of endo processes rather than the somewhat blanket haphazard pic& mix that can be the offering. It’s a bit like the realisations that not only are there different forms of cancers, but that the same cancers respond better to targeted gene therapy for delivery. Targeted endo treatment surely has to be the name of the game.( I think the analogy of we are all playing a game of snakes and ladders but how we get across the board has a wide range of possibilities bears some weight ) That’s another territory again that’s needing far more research.

[BloomingMarvellous in reply to BloomingMarvellous]

Side note on the immune regulation issue. The raised levels of prolactin noted with endometriosis ( indeed being used by some as bio marker for staging ) has offered another cross link to immune regulation and treatment especially with adenomyosis. Here there has been some success with using bromacryptine rings in the vagina to treat adenomyosis and the pain associated and low dose cabergaline (sp ?) orally in other reviews has met with some success. Both have side effects and aren’t a magic bullet. Raised prolactin again tends to appear with some other autoimmune conditions such as lupus , MS , EDS , IBS and some cancers. High levels can be suppressing of both oestrogen and testosterone so rationally you’d think suppression of prolactin wouldn’t necessarily be helpful if this is the body’s own suppression system of oestrogen. My take on this is there some other larger factors in the mix here upstream of all this . They are aware prolactin has a role in immune system but again not really fully understanding the pathways. It also appears to correlate with high levels of pain . The latter I think most of would own as a major issue

[Sabrinacolada]

Completely agree more research and funding is needed in general. As per lindle above unfortunately pregnancy won't cure endo but can suppress it while pregnant.

Pregnancy produces high progesterone to thicken the uterine lining and maintain a pregnancy. It is about 10 times higher during pregnancy. It suppresses oestradiol and prevents ovulation. Oestradiol can fuel endo to flare and grow. Thus pregnancy is helping to supresss this but only while pregnant.

The medical equivalent is taking the progesterone only/ mini pill. But the endometresiosis specialist I spoke to said he estimates successful in about 6 out of 10 women in reducing symptoms and pain ( I am not one of them!). The pill supresses oestrogen production by the ovaries but endometresiosis can produce its own oestradiol.

Another treatment is Gnrh agonists. They act higher up in this pathway initially causing an increase in hormones then the feedback loop is suppressed so non are made. He estimated the success ( reduced pain and symptoms) as 9 out of 10 women but only licensed for 6 months use. Although often used longer with bone density scans, hrt. Also for the first weeks more oestrogen is made so can significantly flare up more and get worse before better.

Hope any of this is useful to you. My personal opinion is they should be researching other treatments by exploring the mechanism of disease further. Some have suggested reviewing it as an autoimmune disease or at targeting mast cells since these are responsible for scarring and fibrosis.pubmed.ncbi.nlm.nih.gov/360....

❤ Sabrina X

Hormone feedback

[Nikkky]

Hi. The area of women’s health is so neglected when it comes to funding and training. It also doesn’t help that gynaecologists are not specialists in hormones.....unbelievable!

I agree with the other ladies in that progesterone treatment is needed to control endometriosis. Because of their lack of interest and expertise gynaecologists firstly offer synthetic progesterones such as the mini pill or mirena coil, which come with side effects and health risks with long-term use. When they don’t work they move on to the Gnrh injections that put us into chemical menopause, which also comes with side effects and is not good for our health. They work on the old theory that cutting off our oestrogen supply is the answer and they don’t think of the terrible consequences.

Oestrogen is essential for all of our organs and systems to function properly. Unfortunately when we have endo we are made to fear oestrogen and the medical profession reinforces this fear. Addressing the hormonal imbalance is key to treating endo and the best option is to not reduce oestrogen at all but replace our progesterone using the body identical progesterone capsule called Utrogestan. Gynaecologists and g.p’s don’t seem to be aware of this natural progesterone, which can easily be prescribed on the NHS. It is the gold standard when it comes to prescribing HRT too but not a lot of health professionals know about it due to the lack of training.

I would recommend that any woman offered a synthetic progesterone please ask about Utrogestan. I wish I’d known about it years ago as I might have avoided a hysterectomy. It’s only having to research menopause and HRT (as menopause care is diabolical too!) that I’ve come to understand hormones even more. I thought I did understand quite a lot with having to research endo and adenomyosis for years! My hysterectomy got rid of the uterus pain from the adenomyosis but the usual, stabbing left ovary pain soon returned. Starting oestrogen only HRT quickly caused a return of bowel endo symptoms and then I found out that endo suffers should take a progesterone after a hysterectomy. Soon after starting on daily Utrogestan (along with the oestrogen replacement) my bowel symptoms resolved and my pain reduced. I’ve now just got what feels like the niggling, pulling pain from adhesions in my left side but I can cope with that.

One thing I’ve learnt over the last 25+ years is that we can’t rely on health professionals and have got to do our own evidence-based research and advocate for ourselves xx

[BloomingMarvellous in reply to Nikkky]

slight note of caution with Utrogestan is if you have problems with or allergic to Peanuts it’s a no no.

[Stitchrunner1]

I cannot say how or what research should be done. It is not my field of expertise. One thing is certain though, more research needs to be done. One very small glimmer of hope, NICE the body in the UK that directs where research should go and how the NHS should handle diagnosis of illnesses and treatments that should be offered around illness and disease has just approved research and better diagnosis of the illness and better pain relief protocols. It is a very small but significant step forward. The Endometrios Society linked to this site are ever pressing for more and better treatment. We definitely need Endometriosis to be taken much more seriously.

[Lindle]

It is actually the combined pill that mimics pregnancy and makes the body think it has just ovulated Whilst some progesterone pills do stop ovulation not all do and I suspect oestradol levels are likely to be higher on progesterone than on the pill. I haven't been able to find much documented on hormone levels on progesterone though. We do always have to remember though that any pill, GnRH agonist or pregnancy as a 'treatment ' will only ever be a sticking plaster due to the ability of endo to biosynthesise its own oestradiol that none of these stop.

[Nikkky]

It’s so difficult but I do feel that we should be given the choice between synthetic progesterone and body-identical progesterone. Moving forward I’d prefer to avoid the cancer risks associated with synthetic progesterones. The body-identical version is very safe.

I know some women with endo take a higher dose of the body identical Utrogestan and that prevents the oestrogen from stimulating their endo. It’s not that endo suffers are producing too much oestrogen-it’s more that the progesterone (and sometimes testosterone) is too low and needs topping up. It makes sense to me when you consider that progesterone is the first of our hormones to deplete.

[65br in reply to Nikkky]

Hi Nikky, is there any way i can message you privately about these things, thanks so much, Andrea

[Nikkky in reply to 65br]

Hi Andrea, I think if you can send a private message by clicking on my name

[Chocoholic168]

sounds like a good way to at least try and find an outcome. I know the oxford uni are doing research as you can find the survey on endo uk website. I did fill it in , in a bid to find an better way of diagnosis for women. Lets hope they dont nick your idea! 😊