Endo - intro

Hi all, I'm cheryl and I'm 35. I was diagnosed with endometriosis and a fibroid in June 2010 following a laporoscopy and hysteroscopy. At the time I was recently married and wanted to try for a baby. I was given 6 months of zoladex injections then tried to conceive naturally for 12 months but had a failed attempt at Ivf in April 2012. We started the adoption process in September 2012 but unfortunately by husband was diagnosed with leukaemia in March 2013 and passed away in the November. In the meantime my endometriosis symptoms were just bearable. I have always suffered with heavy periods but used mefanamic acid and tranexamic acid to control them and my cycle was generally 21/22 days. My periods are painful and I suffer a lot of back ache. as I said until January this year I was able to cope with the symptoms but it became unbearable so I was referred back to the consultant gynaecologist. I saw her in March and she put me on the mini pill. I was fine for two weeks but then started bleeding. After 3 weeks the bleeding was so heavy I had to phone in work sick. I saw my GP who gave me the combined pill to try. Things improved with this but the bleeding never completely stopped and the last couple of days it's started to get heavier again. Also, I had an Ultrasound scan a few weeks back but it didn't show anything. Today I'm feeling so down, almost depressed. This has taken over my life at a time when I'm trying to rebuild a life for myself. I've tried to bring forward my appointment with the consultant but there are none available. I'm not sure I can last til 27th May like this. If anyone has any good suggestions or positive stories, please share them.... I need something to pick me up xx

9 Replies

  • I'm only recently diagnosed so at a very early stage (pre op). My friends have been really supportive, but I think I might want to talk to a counsellor too as it is such an emotional thing to go through. Have you spoken to the Endo UK support telephone line too? They were great. I think it is good to talk things through. Hope you get the best support and care, Ax

  • Thank you for your message, I think I will give the helpline a call. I only found out about that last night then this morning I was feeling less stressed and anxious about things so didn't bother to call but now I'm thinking it'll probably do me good to speak to someone xx

  • Hi Cheryl I'm so sorry to hear your story, the disease is bad enough on its own without anything else going on, no wonder you're so down. It may help to persevere with the secretary to go on the cancellation list too, you may get in earlier that way?

    What pain relief to you use?

    Do you have your family near for emotional support?

    Can your gp do any got you?


  • Thanks for your message, it's good to hear from people who understand. I will be speaking to the consultants secretary tomorrow and hopefully there is something they can do. I'm also going back to see my GP but I don't hold much hope for her being able to do anything for me. I don't feel like I can handle many more days of the bleeding... I've read other posts where people have bled for months and months so I feel quite pathetic saying this after 5 1/2 weeks but it's really destroying me. Luckily I do have a good close family and I know they are always there for me xx

  • 5.5 months of bleeding is not pathetic! I didn't bleed that long and I'd had enough! It causes anaemia too which can make you feel depressed and not be able to cope. Are you taking extra supplements? Have you tried spa tone? The only thing that stopped my bleeding was prostap but different things work on different people

    You def need to chase up your consultants secretary, they'll have to move that appt forward ask if you can go on the cancellation list too

    In the meantime your Dr may help with the bleeding?

    I'm sure once you can get that controlled you'll feel a bit better

    Good luck!

    If you ever need to chat please feel free to PM me


  • I had been wondering if I'm anaemic, I mentioned it to my GP but they didn't seem that concerned about it... Anyway I'd never heard of spa tone so I've just looked it up and ordered some from Amazon. That might give me a bit of a boost. I've only been out twice this weekend for 2/3 hours and had to come home and have a sleep because I'm that tired - that's just not like me at all! Anyway thanks for your advise, hopefully some progress will be made tomorrow and I'll have some energy once my iron supplements arrive!! Xx

  • Spa tone is really good you just put it in orange juice, it takes slightly metallic but it doesn't constipate you

    It will help you boost your iron back up

    Being anaemic is serious it can make you really poorly and have horrible dark thoughts, your Dr can test you for it, demand they do it

    Sounds like you are anaemic, I would have that whilst I was bleeding but I was able to rebuild my stores when just spotting

    Good luck


  • Well that would certainly make sense, I've been sleeping well but waking up tired and my moods are the lowest they've ever been. I don't think I'm depressed but i don't think I'm far off it at the moment! Thank you so much for your help xx

  • No problem hope you can get it sorted x

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