I have two different consultants who have been offering advice on treatment versus no treatment . One consultant says adenymosis and endometriosis are NOT progressive and that contraceptive pill will only help with symptoms of pain . Whilst the other consultant says it is progressive and it will help prevent further endo growth . Can someone advise me on this because I’m completely baffled on what to do and I do want children. I also have cardiac issues so my chance of being able to have kids is fairly low and it might be risky but I can’t quite under and whether to go with treatment or not !
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Khill37
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I can't provide any expert advise - but I had two consultants dealing with me because of the nature of my surgery. And I can let you know what they said to me.
One - my gynecologist - was a lot more gentle in approach and 'suggested' the coil to help manage the condition. My gastroenterologist was pretty much adamant I take some kind of treatment ( coil or pill ) as his perspective was that it slows growth and when I already had growth on my colon and appendix that required 'emergency' surgery - that it was important to manage growth as much as possible moving forward.
At the moment I have the merina coil - and Im looking for further help to manage symptoms, but it has reduced bleeding a lot in the 4 months.
Hi, I’d be extremely wary of any consultant which says the endo/Adeno aren’t progressive. They don’t disappear, it’s a chronic condition controlled by your own hormones.
Hormone treatment gives us the best chance at stopping regrowth or progression. It’s proven. Success varies between people, for some it works, others it doesn’t help at all but doing nothing is a risk and my history has proven severe deterioration when not taking any contraceptive.
I’m obviously not a doctor but there should be an approach offered to at least try to prevent regrowth, which would suggest it’s likely to progress without. A lot have issues taking hormone treatment (myself inlcuded) but we wouldn’t be doing that if there was no evidence to show there’s a chance it helps xx
I don’t react well to progesterone only. Which is the preferred option. Mentally it’s hard on me, it also makes me permanently bleed/gives me skin problems. It will be different for everyone but I'm currently on a combined pill (Mercilon) which is a gentle option as low dose hormone. I was willing to try anything to stop regrowth x
Have you had any progesterone only treatment before? I had the implant in my arm which is progesterone only, my reaction to that was the same as the progesterone only pill. I think they also offer the coil which I declined as it’s progesterone. But this does work really well for people re. Symptoms as the hormones are released locally which apparently helps x
I would say from everything I've read that it's progressive, but a lot of women can actually help slow down progression or at least symptoms for long periods of time. However, this could be after the disease has already reached stage 4. Many young women reach stage 4 very quickly. It's also important to remember that the level of pain does not correlate with the stage. Some women on this site have stage 2 or 3 and are suffering incredible pain wheras I have stage 4 and very little pain. I also know that peri menopause (when estrogen is erratic in the body and generally very high at certain times of the month) stimulates everything and makes it very difficult. You also need to distinguish between progesterone (natural progesterone like HRT utrogestan) and progestin which is synthetic and on birth control drugs. I struggle with progestin (a lot of women with endometriosis do) but I'm good on natural progesterone.
My endometriosis was discovered during a hysterectomy and they couldn't do the operation as everything is fused and they weren't endometriosis specialists. I'm 51 and did not know i had endometriosis. My adhesions are grey and old and very well established. It's still alive but it's not necessarily active at present. Taking HRT with a high dose of estrogen was making it active and making fibroids.
In my 30s I changed my lifestyle dramatically and this helped my endometriosis so you can help the disease not to progress but it is a progressive disease. Some women on here have it on their lungs and it affects many of us with our bowels often going into the bowel. I'd do some research and question the consultant who said it's not progressive. If you have endometriosis you'll probably be estrogen dominant as estrogen drives it so be very careful about the balance between estrogen and progesterone/progestin. Hope that's of some help x
This is probably way more than you immediately need but here goes.
While there are different forms of endo - not effectively understood in their extent or progression patterns or their relationships to genetics or other factors- endometriosis and adenomyosis are viewed as progressive albeit varying rates. In certain areas it can be seen to have burnt itself out.Why is again is the million dollar question. It's not predictable as yet. Much is so unknown and it's safe to say it's a field that needs a lot of investigation. What is being appreciated now though is the commonalities between endo tissue which is referred to as being benign ( ie doesn't kill you 🙄although for those whose kidneys have been mullered by the disease, perferrated lungs, or bowels strangled will probably care to differ over that one ....) and some other invasive cells like cancers. Why it's similar but isn't cancer is as yet unknown. Some biomarkers for cancer also seem to occur with endo like Ca125 . There are some arguments about the use of Ca125 levels as being a helpful way of staging endo. Hence you'll sometimes find GP's testing rightly for Ca125 to ensure it's not raised, it comes back raised ; on investigation it yields nothing bar you should be alerted to re check some months on and that it's a possible indicator of endo if you are in the know on this one. Likewise there are other common factors like the common involvement of a poor functioning NSPR gene being an issue for some endophenotypes. You may see in the family pool depression, alcoholism, bi-polar, heart disease, diabetes as well. This gene dysfunction seems to require a higher level of Omega 3 than understood to be standard to function more healthily. A lot of endo sufferers benefit from ensuring they have a healthy intake of Omega 3 and a Mediterranean type diet. The clues are around us if we care to note them as to how best to temper or skew our care path.
A lot can be learned about good endo care if the genetics and processes involved were properly understood and the co-morbities paid attention too. It's important to question which bigger picture endo is part of to treat someone effectively long term. I am firmly of the view that just because endo tissue stops or slows in progress through and beyond menopause doesn't mean it stops existing or having an effect on our health. It's just that the disease progression isn't yet properly understood. If you don't ask the questions you don't have the information and you can't see the bigger picture on long term health outcomes. The lens needs to be recalibrated.
There are recent studies that raise valid concerns around certain forms of endo being more closely linked with ovarian cancer and raising the risk levels that need more studies to corroborate or deny the link. It's been an on / off debate in the past and is back again with new research.
With adenomyosis there are the added factors to consider of what it actually looks like and what sets it in motion? It used to be thought that a bulky uterus was the gold standard measure for adenomyosis but it is realised that actually it can be much finer and more diffuse in the uterine tissue. It therefore doesn't have to be thicker or bulkier for there to be adenomyosis. Causative factors are being queried including placenta implant scarring, including failed pregnancies , d and c's etc. Localised damage and inflammation seems to be a factor along with stem cell implants. The knowledge is pretty basic even more than with endo.
Endo can be seen to be more aggressive in some much younger girls and women and this seems to have some association with heritable risk with other family members also suffering from endometriosis. Some evidence suggests that it may even start in utero. Too little understanding of this means we can't ascertain whether this is usefully predictable for treatment planning. My take away on it is more pragmatic if 90% of my female relatives have issues that walk and quack like the endo & adeno duck then the likelihood of me with said same symptoms not being the same duck are pretty slim. I call it common sense.
What endo tissue shares with cancer tissue is that it has the capacity to grow and locate itself in several locations albeit at different rates and outcomes. Similar but also different. Sharing commonalities is not the same as being a thing though.
The consultant appears to be completely swimming against the tide of known information in this regard by saying it's not a growing entity. If I were you I would either ask for clarification of what they meant by this information or just bypass and go for the one that is concerned about growth progression. How you care for yourself and reduce overall inflammation will likely also help but that's another bag.
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