Hi is anybody on here from the coventry a... - Endometriosis UK

Endometriosis UK

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Hi is anybody on here from the coventry area? Newly diagnosed and worried.

angiechick78
angiechick78

I was diagnosed in November with endometriosis and possibly adenomyosis after having an ultrasound scan. I go back in January to see the consultant but I'm just feeling I'm going to be put on lots of different things over the next few months to try and "help" my symptoms. I took cerazette initially and it made me feel awful. My emotions were all over the place ( I've suffered with depression off and on for the past 12 years ) and stopped taking it. I have been offered a mirena coil but have declined as had 1 for 7 years but had it taken out in hospital after I was taken in with severe abdominal pain. I've said I WANT a hysterectomy as I've had my family (3 girls + 6 step children+ step grandchild due any day!!). My partner has had a visectomy so we definitely don't want any more! But I was told I would have to try different things including zoladex (which my mum had a horrendous reaction too) to induce menopause. Just feeling really fed up and needed a rant to others who understand. :'( thanks for reading xx

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Hi hun, i really do feel for you :( sometimes its like our consultants dont listen. Im currently on sertraline for depression which i find does help. And prostap injection for endo but i still feel the pain just no period. Xx x x

Please don't fall for the myth that a hysterectomy is the solution. If you have adenomyosis then yes it might be, but for endo it is not. Endo is the one that grows everywhere else but the uterus, so unless your surgery is on everywhere else that the endo is growing ie appendix, omentum, bowel, bladder, colon, intestines, ovaries, ligaments, POD and on and on (it could be really extensive) then no hysterectomy will rid you of the endo unless all of it is removed in the one mighty large and long surgery. And that rarely happens on the NHS because it usually means having multi-disciplinary surgeons on the team - experts in bowel surgery, bladder surgery etc as well as an endo specialist gynaecologist.

There is no quick fix. You first need a diagnoisis. An ultrasund cannot diagnose endo, it can hint that you might have it, but it will never show up where it is located nor how much damage is endo and how much is adhesions (which can be just as debilitating) or how deep the endo has infiltrated organs.

So next step is to insist upon a laparoscopy to diagnose you properly to map out all the locations, remove any surface lesions where possible and possibly after that a follow up operation in conjunction with specilist surgeons for what ever organs may have deep endo.

It might be that there is no endo at all, just adhesions and mybe adeno in the uterus muscles - in which case having the uterus removed will help you a great deal as that will remove the adeno, but again the procedure does not guarantee a painfree future.

One thing for 100% certainty - if you do have Endo an hysterectomy is not a cure. Plenty of ladies still have endo after they had their uterus removed because the surgeons did not remove all the endo at the same time.

You have to think of this as two or three or maybe even 4 separate issues.

Bad periods - which you can control with meds or ablation or hysterectomy.

Adenomyosis - which is usually resolved for the most part with hysterectomy

Adhesions - scar tissue which is never cured - and can be cut back in an op, but each op and tummy trauma just encourages more adhesions to grow.

Endometriosis - can and does grow anywhere it likes and feeds of the oestrogen your body naturally produces and it is not just the ovaries that produce it - so even a full hysterectomy and oopherectomy (ovaries too) will not stop remaining endo from getting its hormone supply. That needs surgically removing of each and every last tiny spec of the disease and there could be hundreds and hundreds of locations or maybe just one or two or anything inbetween that.

Besides all of that - if you do get your ovaries removed now at your age - you will have to be put on HRT for decades - as you do need the hormones normally produced by the ovary, to protect your heart and bone strength till at least age 55. This same stuff also feeds any endo left behind.

So you may not be any better off at all for having the lady bits removed - infact could end up in an even worse position.

First things first - get proper diagnosis by having a laparoscopy to map it.

Then if you do have adeno only - hysterectomy only (leave the working ovaries where they are to avoid HRT for years and years.)

If you don't have adeno - then a hyst will only stop your uterus bleeding a period - it will NOT stop the endo patches everywhere else from having their little periods each monthly cycle.

Zoladex - there is not much point taking that without a confirmed diagnosis - so push for surgery as the next step to actually get properly diagnosed. Zoladex as you know is a very powerful drug - it should never be taken speculatively as a tool to diagnose, it is not ever a substitute for endo diagnostic surgery infact can make such surgery more likely to fail. Because it will make the endo dormant for a while if youu do have endo - and thus much hrder to find ALL the endo locations that need to be removed.

Surgery 1st - then zoladex after if you want to hve a break.

Though zoladex should not even be necessary at all - as a good surgical team will remove all the endo lesions anyway and avoid any need for zoladex. Which is not a cure- just a gynaecologists way of fobbing you off for a few months because surgery waiting lists are so long. Zoladex is a big no no if you do have a history of depression - it can make it seriously worse - even with HRT added back every day - may not be enough to ward off the return of depression.

Once you have a diagnosis by surgery then you need to get to referred to an endo specialist gynaecologist - they are a different breed from the regular fertility gynaecologists that do most of the endo surgeries who do not have the expertise to remove extensive and infiltrating endo. They can help by removing shallow surface endo- but you do need endo expert surgeons for the depper stuff.

Lots to think about and learn about - but for sure a hysterectomy is not the solution to endometriosis. Good Luck getting a diagnostic laparoscopy sooner rather than later.

You need to know for 100% certainty what you are dealing with inside.

Thanks for your reply. I have had first hand experience of endo for many many years. Coming from a family of women that have suffered with everything from ovarian cancer, cysts, endo, adeno, adhesions etc.... I appreciate all your info but am more than aware of ALL the procedures and diagnostic surgeries. And the fact that a hysterectomy doesn't "cure" endo. As for being on HRT at my age for years that is all a matter of how I will deal with things. It may seem like I just want to "get rid" of my lady bits with no information and seeing it as a "quick fix solution" but honestly it's not the case. I'm aware that I will need a diagnostic lap to ascertain the extent of the endo and adeno but I know my own body and I'm not prepared to go back down the depression road because of hormone treatments. I've battled to be anti depressant free for the past 3 years and I'm not going to take them again to deal with the effects of hormones. I will be pushing for a lap at my next appointment on jan the 16th. Will let you know how I get on.

Many thanks

Hi, I'm not in Cov but I'm in Solihull which isn't too far. If you'd like to contact me to share experiences or even to just swap a few moans please feel free to email on here. Jules x

angiechick78
angiechick78 in reply to JulesUK

You aren't far from me at all lol. Thanks Jules x

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