Newly diagnosed with Endometriosis and worried what lies ahead :(

After years of pain, prodding and poking by doctors I have eventually got a diagnosis and proves that I'm NOT losing my mind and the pain isn't all in my head. So Thursday I was diagnosed with Adenomyosis and Endometriosis on right ovary. Also was given the Decapeptyl injection every 4 weeks to put me into medical menopause, then on HRT (Livial) when second injection is due. I am 38 have 3 perfect children so not worried about having anymore. But definitely want rid of this constant pain, fatigue and mood swings. Gynae wants to see me after 3 months to discuss what the next step will be. If the injection has taken away my pain then options are for me to probably have a hysterectomy or I could stay on this injection alongside the HRT. Has anyone else had or is having this injection or a similiar experience please. I appreciate everyone is different so it won't be the same effect on all but any advice or experience would be grately appreciated please as I'm very scared about what's going to happen to my body but at the same time also hopeful that I can see a light at the end of the tunnel for my long suffering pain. Anyone please help............ sad

10 Replies

  • Hello... I'm sorry to hear that you have been diagnosed with Endo and adenomyosis.

    I have both conditions also and I can relate to the pain

    you are feeling. During my 20+ years of endometriosis I have tried so many treatments and have had a total of six laparoscopies and one major laparotomy. Like you, I have three wonderful children. I am 43.

    My pain has increased dramatically over the last few years. In December I had an MRI scan and it showed extensive adhesions sticking my uterus, ovaries and bowel together. I also have a chocolate cyst, a fibroid and fluid in my pod. Along with diffuse adenomyosis!

    I had a decapeptyl injection in April as I was desperate to get some relief from the daily pain etc. for the first two weeks I felt fine and then the side effects started..... Hot flushes , night sweats, a rash, severe joint pain and worse for me severe migraines which also messed up my vision.

    So I didn't have the second injection and I have no intention of having these drugs again. Some ladies get on well with the decapeptyl, but for me the side effects of the drug were intolerable.

    I have requested a hysterectomy. But my consultant needs to an exploratory laparoscopy first to see how badly my bowel is involved. He will then either book me in to have a hysterectomy or refer me to a more specialised surgeon.

    Best wishes

    Barbara x

  • P.S this is a great website:


    Barbara x

  • Hi Cuddlybarb. Sorry to hear about all your problems and pain. I really do feel that pain with you. Well I'm only on day 3 of injection and have been in tears already and my stomache feels like it's inflamed and warm inside and very bloated worse than normal. But then it's still very early days. I hope you get a hysterectomy and all is relieved. It's not a way to live honestly not good at all. Please keep me updated with how it goes with you. We can try support each other. Thank you for the link. I've been on there but I don't seem to get any replies on that site. Desperate for support and info from others going through the same. x

  • PM me anytime. We can definitely support each other.


  • Hi Gr8 kids

    I haven't been formally diagnosed yet but have had 2 prostap injections to put me on a medically induced menopause. My next injection & chat about the future is due tomorrow. My consultant said that if I found the pain was lessened or gone with the injections that I have endo and she may recommend a lap or staying on injections a bit longer.

    Like you I'm totally confused, I have 2 gorgeous girls already but just want rid of this pain and stress. I'm unsure what to ask about tomorrow and whether to push for the lap for a formal diagnosis or just have a few more injections and see how I go.

    It's great that this forum is about because I feel like finally there are people who understand us and what we're going through and that this pain is very real and not 'in our heads'.

    Best wishes x

  • Hi bmh. I would ask for a lap and that way they can see exactly what's going on inside and you can then decide what your next step will be. How have you being on the injection? Did you use livial HRT as well? x

  • Hi, tomorrow will be my 3rd injection if that's the way it goes. I've haven't had HRT as my consultant said I don't need it apparently. The injections have given me hot flushes, mood swings but haven't completely stopped the pain.

    This has made me confused as to whether it is working or not and what to do next.

    I hope you find the injections to be helpful and pain free xx

  • You should of been given HRT to act against the hot flushes ect. I hope you get sorted soon. It's so horrible. Also I would love to find some info on support and info for husbands out there that go through this with their wives. It's not nice for the whole family to suffer this way x

  • I agree, it's so hard to go through this as a family, how do you explain to young kids why mummy is in pain etc. If you do find anything please let ne know!!!!!!

    How are you finding the injection? I'm so glad you got a diagnosis, it's hard knowing you're in pain and not knowing why and taking years to get this far, any info I find I'll happily forward to you xx

  • I will definitely let you know if I find out anything. As for the injection well I only got it Thursday just gone but I've felt very bloated more than usual and like my belly is inflamed inside and yesterday I was quite tearful. But I'm hoping I can survive these first 2 weeks as they meant to be the worst before it settles down then I'll be having livial from 10 July when next jab is due. x

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