confused!! should i get a 2nd opinion?

i was diagnosed with endo last year and have had surgical excision to treat it last october but unfortunately to no success. i've tried various hormone pills again to success, im able to cope from day to day with the mirena but intercourse with my partner is near impossible, it is really starting to effect my life and i feel this condition rules me rather than the other way around.

my consultant has now said i should go on injections for the pain which will result in me also taking HRT meds, but as usual i didnt get to ask all the questions i wanted!

can anyone help me......

are there any long term effects from these injections?

is there an alternative that will actually work?

if i want to live a normal pain free life is a hysterectomy the only way?

should i pay for a privet consultation to make sure i am covering all my options?

I just want to know iam making the right decisions and have all the facts but its typical that i have all the questions after my appointments!!

If you are able to answer any of my questions i would be very grateful.

5 Replies

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  • If you mean Zoladex or similar implant/injections......these put you in to a chemical Menapause ( as if you've had a hysterectomy) and stop I estrogen being released.

    All the symptoms of hot flushes, exhaustion and other symptoms can occur. And risk of osteoporosis can be high. A background of low level estrogen can help lower the risk.

    I've been on Zoladex for over 8 years.....it's the only thing that helps me and I have to say ....I've got my life back and although constantly exhausted I've been able to work full time with very little absence.

    I had a trial run of 6 months .....but when I came off the Zoladex the pain returned

  • i dont know the name of the exact medication but yes he did say it would put me into a chemical menapause.

    so you can be on this long term then and its a common next step treatment?(when surgery doesn't work)

    And has it help with intercourse as this is my main area of pain.

    im so confused at the moment i just dont know if i should try and be referred to an endo center or stick with my consultant who i have to say since ive been referred to him has never given me cause to doubt him.

    Thankyou for answering my question,

  • Hi

    Yes, the injections to put you in a menopause state are extremely common for endo, particularly after surgery but also sometimes before having further planned surgery as they dampen down the endo. However you need to do your research before you go for it as there are a lot of side effects. I was very anti them before, I really didn't like the idea of them but I got to the point where I had to at least try them, my options are very limited though as the endo is so severe.

    I am currently on a course of prostap injections (plan is 12mths, with hrt after 6mths) it's been 8 weeks and although there have been a lot of side effects (hot flushes, joint aches, sleeplessness etc) it's started to work in the last week or so and it's the only think that has given me a bit of a break, even with the awful sleep! before Christmas I was taking a lot of painkillers and struggled to leave the house and work was nearly impossible so for me right now it was the right thing to do. It has also made sex easier, I used to get awful pain, it's not completely gone but its improving. Thing to remember though is that the injections effect everyone differently, it works for some but not others unfortunately.

    Re hysterectomy - unless your endo is only on your uterus and all endo from everywhere else (seen and unseen) is removed then a hysterectomy won't work, it is not a cure for endo, unfortunately there is no cure, only managing the endo/symptoms as well as possible.

    It can often be worth getting a second opinion, particularly if you feel you're not getting the treatment you need. I changed to private but my original Nhs consultant had no clue and refused to believe it could be endo and got quite a few things wrong so I switched consultants within 15mins of my first appointment with him!

    Hayls x

  • Hi Gina

    I can understand your reluctance about the injections as I was the same as you when I started my endo journey. I had excision surgery, tried various contraceptive pills and had a try with the Mirena coil until it was clear that my body and it were never going to get on. So the hormone injections were my last shot at being pain free. And they worked for me! I was so amazed I wondered why I hadnt tried then first. But then hindsight is a great thing I guess.

    Everyone reacts differently and I think I was lucky as I idnt get many side effects at all. I was also pain free apart from a few aching joints but that may just be me getting old and nothing to do with endo :) I practically bounced into my gynae's clinic room and sat there beaming I felt so good-I dont think he could quite believe it either!!

    As a result of such a positive outcome I had a hysterectomy after 8 months on Prostap. However I haven't felt quite as good post-op and had another lap 8 weeks ago to see what was going on. Endo had returned plus ovarian remnant tissue was seen and excised too. I am about to see my gynae again next week for follow-up where I am hoping he will look favourably at my request to try prostap again. However it is a different gynae to my original one due to me moving house so I am not sure how I will get on.

    It may be worth trying the injections as you dont know how you will get on. But my experience of them was a positive one :)

  • Thank you to all of you for your replies you have made me feel alot better about what I'm going through and that you understand (which of course you do) but you don't know how much I've needed that!

    My friends and family don't really get it and I've felt alone with this for the last year I think I will try the injections and fingers crossed they will help!

    I hope you are all doing ok

    Thankyou again

    Xxxxxxxx

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