Decision to make about Hysterectomy or not!!

I am new to the forum and asking for advice and experiences on a decision to have a hysterectomy or not. I have been suffering for 7yrs with endometriosis and had numerous laser surgeries. Now, after having 2 children, i am on a tri cycle contriceptive pill - then have break - i bleed on and off towards the end of my pill and for the past 6 months i have been having terrible migraines down the right side of my head. I have today been to my Drs and she has taken me off my pill as she thinks there is a high risk of stroke - linked to my migraine / face pain ! She has changed me to a progesterone only pill, but if this doesnt work then i will be refered back to my hospital - where they have said the only option would be a hysterectomy. With this i have concerns of having a major operation at only 37 yrs old and that i would be put on HRT after. I have a family history of problems on HRT and with having to come off the pill due to risk of a stroke this worries me too ! I am a fit and healthy woman who works as a nurse with no other illness's - just this endometriosis !!!!!! Please - if any one that can help me with advice and info ……. im so concerned of the unknown!!! Thanks in advance :o)

8 Replies

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  • Hi there & welcome! :-)

    A hysterectomy is not really a treatment for endometriosis, this is now an old fashioned notion - yet also sadly a very commonly believed myth perpetuated by many Gynaes who are not up to date on endo research, and also many unknowing patients. However removing the uterus is a treatment for uterine problems such as adenomyosis or bleeding issues. Removing the ovaries assuming they are healthy is not really a good idea, they are important for several other aspects of our physical and mental health, surgical menopause can create a new set of problems for some women, and you already have concerns about HRT. The leading endo specialists believe in removing all the disease - not the female organs.

    Although you have had several surgeries, if you haven't seen an endo specialist or had excision surgery yet - to have your endo excised = cut out rather than burnt, you definitely should pursue that before you even consider such drastic surgery.

    This new book is an amazing resource for endo sufferers, and clearly explains the latest known info, which several other places even those that are thought / expected to be credible resources do not, I highly recommend it. :-) bookdepository.com/Endo-Pat... It's not available in the UK yet but you can purchase it from there with free delivery or from Amazon.

    If you are in the UK there are several BSGE accredited endo centres, the rules vary across the regions, however if you are in England it is straightforward and you are entitled to be referred to a specialist of your choice on the NHS. bsge.org.uk/ec-BSGE-accredi...

    Please be aware that the level of skill varies greatly between these specialists, so it's important to do your own research before you decide who to see. We are unable to discuss doctors and hospitals openly on this forum, so I would also suggest you join EndoMetropolis group to ask on there. EndoMetropolis is an educational discussion group on Facebook which has several leading endo experts involved. They also have many great information files about treatments, including one explaining why a hysterectomy is not the best option and the difference in surgical techniques etc. facebook.com/groups/endomet...

  • many thanks for this, dont want to rush into it , i have seen the website for specailist endo drs - i was going to research to them and email them before speaking to gp again next week. I will look at the Facebook group. Thanks for your help.

  • Hi – endometriosis is an autoimmune-related condition in which there is allergy to substances produced by our own body. This is confirmed by the presence of autoantibodies and includes allergy to our own hormones. When I knew years ago that it was oestrogen triggering my symptoms there was little documented but now the condition MCS (multiple chemical sensitivity) is well recognised. It would only take one chemical to trigger the symptoms if the allergy is severe enough. As with allergies generally, the more you are exposed the more sensitive you become and I think you may be starting to exhibit symptoms of allergy to oestradiol. Interestingly the symptoms are exactly the same as those for CFS (chronic fatigue syndrome) which is now formally associated with endometriosis and I believe that the two are one and the same.

    My symptoms started when I came off the combined pill and started ovulating again. For two days or so at mid cycle when my oestrogen would have peaked it was like flicking a switch. I would become overwhelmed with fatigue, lose my visual focus, become severely dizzy, disorientated and confused and lose my memory but the worst of all was crippling head pain like nerves were being shredded. Like the worst tooth ache but in the head. Absolutely nothing would touch it and I was totally debilitated by it. Gradually the episodes lengthened and finally I was like it all the time. I was no longer able to take the pill as it just triggered the same symptoms. At first it was diagnosed for years as ‘in the head’, then a severe hormone imbalance then, when it continued after a hysterectomy, oophorectomy and ridiculously high (mid cycle levels) of oestrogen replacement, ‘atypical facial pain’. Oddly enough mine was right-sided too and I always put it down to a weakness on that side for ear infections. No one ever connected it to oestrogen and it was only years later when I reviewed all my history and started to research that I found it documented and saw all the symptoms I had been suffering as clear as day in black and white. Allergy to oestradiol.

    There was no sign of endo in my pelvis either at a C section or the hysterectomy, which was carried out for severe hormone imbalance. My endo developed afterwards from what was assumed a rectovaginal nodule in isolation under oestrogen replacement but as mentioned the level I was given was ludicrously high, probably enough to kill me (up to 1700 pmol/l continuously for 5 years.) I was 44 at the time and feel certain that if I had been given a very low dose of HRT within my tolerance level for health benefits then I would have gone on to be fine.

    For the purposes of treating endo a hysterectomy/oophorectomy is not considered an appropriate treatment as the endo can still be activated by HRT, or if it is aggressive can feed itself by oestrogen produced in its own cells even without ovaries or HRT. So in any event all disease must be excised whenever possible. But for women like you who I think sounds to have an allergy to oestrogen like I did, you are likely to continue with the symptoms while ever you have ovaries and can’t tolerate the pill. The progesterone will aim to reduce your oestrogen levels and depending on your sensitivity might control your symptoms. But it may be that a hysterectomy/oophorectomy and very low HRT may ultimately necessary. The reaction to HRT by other family members suggests chemical sensitivity too, but it will depend on how high the dose was. You may well be able to tolerate a very low dose.

    What I suggest you do in the first instance is seek referral to a specialist endo centre for excision of your endo as endo itself gives off chemicals that interfere with hormone imbalance. Click my name and look at my post on how to find one. Then I suggest you seek referral for skin testing for allergy to oestrogen as you can be desensitised. I really don’t know who does this but it would be an immunologist or endocrine immunologist and I suggest you research as many such people as you can and ask if they can do it. I am attaching a link to a paper that you can show your GP. Diagnosis and treatment are covered at 7/8.

    hindawi.com/journals/isrn/2...

    x

  • Many thanks Lindle for your reply, i have found it very helpful, your situation sounds very like how im feeling now. I have today been put on a course of steriods to reduce the inflammation at the side of my head - the pain goes all round my jaw and feels so strange. I have emailed a local endo centre to me to see have to be referred or if i could pay private.

    Have you found a change in diet any help?

    thanks again

  • I have had several surgeries for my endo, and was put on the pill to control things, which worked, then I was in a similar position to you, started getting terrible migraines, and my Doctor said I was a high stroke risk, he immediately took me off the combined pill (Femodette) and after a few months break, I was then put on a progesterone only pill (Cerazette) it has been fantastic and I am now pain free and healthy again. I didn't think it would work and was convinced it was time for a hysterectomy, as I also have adenomyosis.

    Hopefully the progesterone only pill will work for you too, I started to feel better about 3 weeks into taking it.

  • thats great to know, fingers crossed then. Glad it has worked for you. Did it take 3 weeks for your migraines to stop too? They are horrid. Ive been put on a course of steriods today to try and help.

  • Sorry for the slow reply, I have suffered from migraines since my teens, however, they didn't have an aura and they were few and far between. I started to have migraine with aura which is apparently dangerous if you are on the pill and the attacks were becoming more and more frequent, my Doctor told me to come of the pill and wait a couple of months to see what happened with them and when I did the migraines stopped within about a week, so it would seem it was the pill that made them worse all of a sudden.

    I still have had the occasional one, but they are sorted out with sumatriptan and are without aura, and nothing like when I was on the pill.

  • thats good to here your migraines are alot better, i have tried sumatriptan but it makes me feel sick - maybe i need to keep trying. I am on a pregestrone only pill now, but still bleeding, we will see if it calms down. Thanks for your reply.

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