worried

[annelou74]

Hi im new to this site so please bear with me, i had heavy painfull periods for years that seem to get worse after each of my children ( i have 4) the drs gave me the myreana coil which as strange as it seemed i could feel it in my womb and bled constantly till in the end i told them to take it out, the drs sent me for a scan and a appointment to see the gynae, the scan reveald small fibroids and that was all so the decision then was to have a endometrial ablasion ( cooking of the womb ) a couple of months after surgery i thought wow is this what periods should be like, but then it started to get heavy and clotty again then the pain started creeping back in, 6 months after surgery as my period started i had an intense pain the crippled me my husband thought he would need to phone an ambulance as i had gone grey in colour, i went and seen my dr that day which she said i think you have passed a bladder stone as they are extremely painfull and hurts when weeing she put me on antibiotics and sent me on my way. time for the next period and the pain started again lasting my whole period untill up to this point where even when im not having a period i get period pains, bloating, joint pain and acid indegestion, so the drs sent me for another scan and did the ca125 blood test the scan showed nothing externaly but internaly showed little fluid filled pockets in my womb wall and the ca125 blood test came back slightly raised the dr says it all points to endometriosis but that can only be confirmed via a laparoscopy, back to the gynae i go, he said he is going to do a full hysterectomy with removal of my ovaries, my concern is will he see the endomeriosis once he has opened my tummy up as most people have a laparoscopy first with excision to remove endo thats attached to organs, he says i will be put on HRT as im only 39 not knowing much about HRT will this not still feed the endo thats left if there is any what im worried about is even after a hysterectomy could i still have problems from endometriosis or will the hysterectomy stop it sorry its long winded but the pain from it can be scarey as its not a normal period pain feeling, i would love to hear if anyone has had a similar experience and even from ladys who have gone through sugery and how they feel after

thank you

[dabba76]

Hi I'm 38 at my last appointment with the consultant she said that there was no point in giving me a hysterectomy as because I am so young I would need to be put on HRT and the endo strives on hormones. I left feeling very deflated and wondered if she was just saying that to get rid of me or if it is actually true.

I would think (not being an expert) that they would give you a lap to diagnose. I cant see them giving you a hysterectomy there and then.

I would be very interested to hear from others who have gone through surgery too.

X

[annelou74 in reply to dabba76]

thank you, im sorry to hear that you felt deflated, the gyno is doing a hysterectomy im waiting for my date to have the operation, keep going back if he can do it to me and im 39 and ive known women younger than you that have had a hysterectomy and have to take HRT good luck its taken me a few years to be listened to but then i moved to a different county and i was listened to straight away x

[Linds123]

Hi. As far as I am aware if they remove the endo and put you on hrt you won't have the pain after a hysterectomy - so long as it is all removed. I have been told that both ovaries need to be removed - I'm 32 - but they only told me this after doing a lap to see what exactly was going on. I have been fortunate to be referred by my gynae to a consultant at one of the accredited centres, not sure how the nhs works but maybe you could request a referral to someone else if you want another opinion...bsge.org.uk/ec-BSGE-accredi... ... Good luck!

[annelou74 in reply to Linds123]

thank you

[Impatient]

The fluid filled pockets in the womb wall - are probably adenomyosis - very similar to endo - and treated in much the same way. the only cure for that and it is a cure, is to remove the uterus taking all the adeno cells out in the process.

You can have both endo and adeno. most ldies have one or the other. They are separate conditions, having one does not mean you have both - but a surgery would confirm if it only deno that is the problem - and if you have already had fibroids and completed your family then a hysterectomy will remove all the adeno.

It is ONLY the uterus affected by adeno - there is no need to remove the ovaries. If you can keep just one ovary then you avoid the need for HRT.

Having only a hysterectomy - just the uterus without having an Oopherectomy is what the NHS consider best practise. Even if you have endo too, it is better to hold on to one ovary t least rather than go on to HRT. Much healthier for your body. HRT can never replace all the good bebefits of a working ovary.

From what you have described there is no reason to lose both ovaries at this point in time.

If you do have endo - and it is not entirely removed along with the uterus - then having the ovaries out and using HRT will keep the existing endo active.

Not everyone has a good time on HRT soit is a bit of an unknown risk to swap perfectly working ovaries for HRT.

I would definitely insist that your surgeon does not remove both the ovaries - if you have been plagues with ovarian cysts then you could lose one half the problem and keep the other.

One is enough.

At the time of the op - there is a consent form to sign. That is where you have the right to add what you are and are not willing for the surgeon to do. That is where you need to put it in writing and sign it, that you want the surgeon to save at least one ovary.

Please speak to yoru surgeon about this in advance of that so he/she knows your wishes and can plan for it. Adenomyosis only grows inside uterus muscles no where else and won't affect ovaries.

It acts like endo and bleeds each period cycle trapping the blood inside the walls.

there is a website for all things adeno - please read it all and then you willhave a much better understanding of the condition and willbe much better able to argue your case for keeping an ovary. adenomyosisadviceassociatio...

If you do not have endometriosis or cysts then there is absolutely no reason to lose an ovary at all unless you are a very high risk for ovarian cancer, which most of us are not.

Page 45 of the following PDF is the NICE guidelines for the NHS surgeons.

Bottom box clearly stating Hysterectomy -do not remove healthy ovaries.

[Impatient]

Woops forgot to give you the link for the pdf

nice.org.uk/guidance/cg44/r...

[annelou74 in reply to Impatient]

thank you the gyno did mention adenomyosis, but couldnt remember the name,he thinks i have endo to, i think the reason he is removing the ovaries is because of the ca125 blood test, which is a test they use to detect ovarian cancer but it also detects inflamation in the area, which my blood test suggested as it was only slightly raised, thank you again for your reply