Endometriosis UK
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really disappointing appointment with the consultant yesterday :(

Hi everyone!

I have been on decapeptyl injections for the last 6 months, which has gone really well, I did have to do it with HRT as the side effects were too much for me to cope with. But once that was under control, the pain was so much better and no bleeding at all. Before this I tried all types of pill, plus pills to try and get the bleeding under control and nothing helped, I also had a coil fitted which just made things worse.

Yesterday I went back to the consultant to decide what the next step is.....I really have made up my mind that I want a hysterectomy. The menopause has suited me really well and I have my family complete.

He told me I have two options - 1) do nothing or 2) Go back to taking the pill.

Surely this cant be right??? I don't want to go back to taking the pill, it doesn't suit me. there must be more options than live with it...... I am dreading the pain coming back, but even more so if this is the end of any treatment for me.... feel like im at a total dead end, I have spent the last 2 years fighting just to come back to this again..

Advice anyone? Its been a really low day :(

1 Reply

Hi Laur,

I am sorry to hear you had such a frustrating day with the consultant yesterday, I also had a difficult day with my consultant yesterday so feel your pain! it is so hard to cope sometimes when you feel as though they are not listening to you, and telling you something which you don't want to hear without offering better alternatives or options.

I don't know anything about Decapeptyl injections I'm afraid, as I have not tried these for my symptoms. However I do know from bitter experience, and from reading through other ladies cases on here, that doctors are not always right, and there are always alternatives. Are you able to get an a second opinion? Are you seeing an endometriosis specialist or just a normal gynae? If not can you ask your GP to be referred to a specialist for a second opinion? You can request all your notes, and Xrays/images from your ops to be sent to you, which you can then take to the doctor you wish to see, even if they are in another county you do have the right to do this on the NHS - though you will need a referral from GP or a consultant - and this may take a bit of pushing. (I am currently in the process of trying to do this - just need to work out where and who to go to).

What pills have you tried? I have just started taking Naproxen, and altho it does make me feel a bit nauseous and dizzy, it has helped to minimise my bleeding a lot if I start taking as soon as I feel period pains (2-3 days in advance of period) - I have tried many other things that didn't work before. I had to go on a work trip recently which involved walking around a lot, from 8am to 10pm for 3 days, and I was able to do this on my period, and just about manage the pain and bleeding for the first time in ages, usually I would be holed up in bed at least for the first 2 days! Plus I wasn't dashing to the loo every half hour/hour to 'refresh' which usually I would have to on my periods.

I'm glad that these drugs worked for you, and I am sure that there must be an alternative to the pill. If you feel it is right for you to have a hysterectomy, you should be given some really sound advice about the pros and cons of this, so you can decide whats best for you to do, rather than be dismissed. I hope you find a good doctor who will give you the right information and help you to make an informed choice, that you should be allowed to do for your body. Please don't rush to have the surgery without advice which you feel is really rounded and make sure you know about the cons as well as the pros before you go ahead. I speak from experience of bad after effects from my laps.

Thinking of you,

Foxface xx


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