I was diagnosed with Endometriosis 6 years ago, and with Interstitial Cystitis back in October. Since my last surgery in October, despite it taking longer to recover than my first two surgeries I've been feeling really 'normal' and like an actual human being. That was until 2 weeks ago when the unbearable pain returned, along with heavy bleeding, and not being able to pee! (Sorry too much information!) I was looking to find out how other women cope with the effect on their mental health when they are feeling so physically drained and like a human punch bag. I've been really struggling to feel happy despite recently getting engaged to the most wonderful and supportive man, starting to plan my wedding, and planning a move to a new city. The pain I am in, along with having to be signed off work really makes me feel like I no longer want to live, which in turn makes me feel crippling guilt because I have everything to be happy about in life.

How do others cope at work when you're in so much pain you can barely focus? Or like I've had to have you had to get your doctor to sign you off?

Also does anyone have any advice for my fiancé anything their partners do for them to make them feel comforted when they're having a bad time and have to give in to the endo and just rest? Although he has done lots of research on both Endo and IC, he feels useless when I am in pain and like there is nothing for him to do. I should probably know how to advise him but when I feel like this I can barely think myself.

Thank you for taking your time for reading, and any help and advice you can give me! x

7 Replies

  • Hi there, I havnt really got any advise just wanted you to know you are not alone, I feel very down most days, due to the amount of pain I'm in, I only work 12-16 hours a week and I'm struggling some weeks, on th days I don't work I do very little and rest, I feel very guilty towards my family, my husband is great and I have 3 wonderful sons, but find feel like I'm being the mum or wife I should and want to be, I'm awaiting my results from my MRI scan and hoping god further operation to removed endo,

    My GP has out me on citolopram only been a few weeks, havnt noticed a difference yet, but might be worth a try for you,

    As long as your partner is looking after you, ie helping with dinners and house etc, there isn't anything he can do, maybe a massage of a nice hot bath with some soft music, it's very hard for men, they think they should be able to keep us safe from pain, but nothing can be done in thus case, just reassure him his doing a good job, I've just reminded myself of this now, so I'll go and tell my husband this too, lol.

    I hope you find done relief, are you being seen by a specialist at a BSGE centre?


  • First time on here and newly but finally diagnosed, this post was just what I needed to read.

    I feel guilty, worried, confused its all so strange.

    Awaiting a scan and more tests to get a better picture but thought I would start by speaking to people who know what I'm going through.

  • I'm glad my post was something that you needed to read. I remember when I first got diagnosed, I did not know who to turn to. I am also new here, and just reading other peoples posts is giving me much needed comfort. I know longer feel so isolated and alone.

  • Thank you so much for taking the time to reply. Please remember that you may not be the mother/wife you thought and imagined you were going to be, but you're the best one you can be. I'm sure your family understand and love you so much!

    I am not being seen by anyone at a BSGE centre, but my consultant is an endometriosis specialist. Until I joined this forum I had never heard of BSGE centres. It seems I am constantly learning new things about other places to find help.


  • Hi - most general gynaecologists refer to themselves as endo specialists because endo is not classed as a sub speciality and comes under general gynaecology. However endo is a hugely complex disease that needs the attention of someone who has made it a main interest. Do you know where you had endo at your last lap and what was done? Excision surgeons working in centres have done advanced excision training and so there can be a great difference between a good general endo 'specialist' and an advanced one. What are your symptoms?

  • Thank you for replying. Until I came on here to speak with others with endo I didn't realise there was specialist centres - I have now done some research and found there is one in Cardiff (which is lucky as I'm moving there soon). However I'm not sure if I have to get referred by a GP, or I can contact the centre directly. I'm finding that a bit confusing.

    My last lap they removed all the endo through excision, and then did a biopsy on my bladder and they've had lab results to confirm I have interstitial Cystitis.

    Constant pain in my pelvic area, back, and occasionally into my legs. Mood swings. I have found I have periods of bad anxiety and with that comes feeling depressed. I also suffer hot flushes. I can have constant heavy bleeding for weeks (worst time was 10 weeks) until my doctors give me tablets to stop the bleeding.

  • IC can give similar symptoms. I'm not sure of the referral process in Wales as you don't have NHS Choices but hopefully your GP can refer you.

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