Endometriosis UK
34,123 members30,511 posts

Its Back Again!!

I was diagnosed with endometriosis about 14 years ago, I am 45 this year, think I must have had just about every type of hormone treatment there is, the only think that really worked was Zoladex which after several six month courses it was decided that I should stay on it as long as needed. I was unable to take any form of hrt, the side effects from it were worse than the zoladex, so just took calcium tablets and had regular DEXA scans. The surgery decided after about four years that I had to change to prostap which I didnt get on at all with, as I was feeling well at time and was having no pain that I would see how things went without any treatment, I was lucky periods returned after about six months, I had couple of heavy painful days a month but nothing I couldnt cope with. I had my gallbladder removed in August last year and didnt have a period for about three months, when they started again they came back very heavy and was losing huge clots, also had lot of pain week or so before bleeding starts, since then have been bleeding every two or three weeks. In October I had to have blood tests which showed I was low on iron levels, I havent been able to take any form of iron supplement and levels are still very low. I had appointment to see GP today who is almost sure its my endo that has returned and has prescribed the Progesteron only pill (Cerelle) for three months to try and stop bleeding. If this doesnt help she thinks maybe its time to go back on Zoladex. About ten years ago I was advised by consultant to have hysterectomy but because both my Mum and Grandad were very ill I put it off, which is how I came to be put on Zoladex for so long, although I know it works I really dont know if I want to go back down that road again but the thought of going back to being in constant pain really worries me but feel I may not have many choices, I am lucky to have such a great GP, shes always been very supportive!!

1 Reply

I am just a bit older than you and in a similar position, having exhausted all hormonal treatments or not be being allowed them anymore. My most miraculaous treatment was decapeptyl, which I managed to get prescribed for more than 2 yrs(due to own ill health preventing hysterectomy or any surgery. I had 6months without HRT then went through numerous HRT tablets .all of which made my asthma worse, then developed a suspected pulmonary embolism and was taken off both! Now I am only allowed depo provera jabs and they are not working.I am unsure if the progesterone only pills contain the same amount as the jab ,so perhaps the jab may give better relief - after the first month of depo I have never bled at all,so that ,even if not helping hugely with pain is a big plus.Others on here say the mirena coil works well -haven't tried this- so that may be another option.

Keep looking on here as there is a wealth of knowledge and experience amonst the forum ladies and there will always be someone you click with or who has been through or is facing a similar thing.It so helps to feel you are not alone.

Al lot is said on here about finding a specialist endo centre as they have skilled gynaes who can do great things,excising the endo rather than just telling you that hysterectomy is the only option.I have been told this and am in Scotlands only endo centre so am fighting for excision lap and leaving my one ovary which was ok at last lap.HRT causes great problems and you will be given it if you are not menopausal -a big issue if you cant tolerate it.

If your gynae will put you on zoladex again -will he/she without HRT?- may be worth it if you know it works and then see how it pans out.Not many of us ladies would long for menopause lol!I have been hoping for years,as my mum was stopped at 42yrs,but not working that way at all!

Re iron supplements -there is a liquid iron supplement called Spa tone which you can get on amazon,tesco etc which does not have the same bad effects as iron tablets.My medicinal herbalist recommends them .You just power the sachet into some fruit juice or water and you don't taste it.A friend who was very anaemic used them,when tablets made her really sick.There is also a make called Floradix which comes with other vitamins and herbs -that might be good if you need a general boost.Think that is widely available.

Feel free to pm me if you wouldlike to chat more.


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