Am I going mad!

Hello. My name is Emma, I am 37 years old and I am new posting here. I was diagnosed with endo 2012 during fertility investigations. Turned out the symptoms that I has been experiencing for a few years previously and could not get a GP to take me seriously. In 2012 they removed endo from bowel, bladder, womb wall and from my left ovary with a very large cyst from my left ovary. They did not grade my endo and I have never had a review for the endo since. I am now experiencing a lot of symptoms and really struggling with them. I have requested a Gp review as I am really struggling at work and home life due to the symptoms. My periods are heavy now, I experience a increase in pain and feel a lot of pressure where my left ovary is. I am always tired and feeling anxious and emotional all the time with headaches. I am now feeling like I am in the menopause as I am hot flushing, night sweats and not sleeping now. I also have IBS symptoms with alot of bloating. Am I going mad or is this all to do with the endo getting worse? I just wish that my periods would stop and not come back as I feel that I can not cope with it all now and get through my work and home life. My fanily, friends and work colleagues are not understanding of how I am feeling and have labelled me as overly sensitive with a attitude problem.

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  • I have stage 4 Endometriosis and it sounds alot like what you're describing. I have had to go from working full time to only 2 days a week because of the pain. Anxiety is a part of it and the pressure feeling, Mine kinda goes from can't walk at all, to pressure, to an itchy inside feeling and back again. I'm always exhausted to after about 4 hours of standing im ready to sleep. I think it's hard for anyone to understand who hasn't gone through it. You are definitely not going mad, it's very real.

  • Thank you for your reply. It is good to speech to some one that understands. It has gotten to a point were my work colleagues are continuously complaining about me and I am feeling under a lot pressure trying to keep on top of my job while feeling like this. I work 30 hours and still struggling. It the feeling of the constant pressure in my pelvis and the anxiety that is the worse for me. I sleep a lot too.

  • Hi

    No - you're definitely not going mad. What's shocking is that your colleagues, friends and family are being so unsupportive.

    I work full time (40 hours min) and it's incredibly difficult to get through the day when I am in pain and feeling exhausted through lack of sleep, and have to keep dashing to the loo when my bowel is playing up. However, I'm fortunate in that my colleagues and line manager have so far been very supportive, which does make a huge difference - if they weren't, I honestly don't know how I would manage to keep working.

    I wonder if your colleagues' bad attitude is down to ignorance about your condition? When I've talked about my illness at work, people sometimes tell me 'my mum/sister/daughter' has endo and they know how painful it is, but I think generally it's not a widely understood disease. If you are effectively being bullied due to your condition, that's completely unacceptable and you should speak to your HR department or a senior manager.

    Regarding your friends and family, perhaps you could show them some of the information on this site, or there are plenty of newspaper articles if you google 'endometriosis' in News - so they realise it's not just you being 'sensitive' - there are 1000s of women suffering the same symptoms, all over the world. Hopefully if you can make them understand what you're going through, they'll start offering you long overdue support and sympathy.

    I hope you don't have to wait too long for your GP review and, hopefully, a specialist referral will follow.

    Best wishes

    H.

  • Hi. Thank you for your reply and thank you for the understanding and support.

    Im trying to get a Gp appointment tomorrow to get this sorted.

    I tried telling my manager a work today, she was some what understanding but ended up sending me home.

    I showed my husband what I posted on here and he has been trying to be a bit more understanding.

    May be I need to be more open with my work colleagues but want to see what the GP says first before I tell them all as they all think it stress.

    I will def think about your advice and try to educate them all about it. To be honest it has been an education for me learning about this. Im just really pleased that I have found this forum.

    Thank you.

  • Hello everyone.

    Thank you all for your support and advice. I have been seen by a Gp today, who did not question that this it properly a flare up of endo. Which has made me feel better knowing that it is not in my head. I have a blood test to have and I am waiting for an appointment for a internal scan. Then go back to Gp to discuss results and next step. He has also commenced me on Desogestrel 75mcg, which will either work or not.

    My manager has been more supportive now the GP has confirmed what it going on.

    Does any one how effective desogestrel is controlling the symptoms or is it a case of it will work or not?

    Kind regards.

    Emma. xx

  • Hi Emma

    Really glad to hear that your GP is moving things forward for you, and especially that your manager is now taking your illness with the seriousness it deserves.

    I haven't had experience with Desogestrel personally but there was a post about it last week which might be helpful (link below).

    Hopefully someone will come along who can answer your questions, but if you don't get a reply in this thread it might be worth starting one with 'Desogestrel' in the title so people spot it more easily.

    healthunlocked.com/endometr...

    Best wishes

    H xx

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