Endo and have it affects me

Hi everyone

I have been diagnosed with endo 6month ago. I started to go to GP with complaints about lower abdomen pain, back pain, tiredness, mood swings, excessive need for rest, you name it :) I couldn't sleep, I couldn't work, I couldn't live my life properly it affected every aspect of my life, I have been taking so many medications that at end of it my body got use to it and no medications helped me, not anymore.

I had two years of a nightmare, from the start I have been told that the pain that I am experiencing is period pain, off course I knew that there is something else wrong with me. To be honest after so many times being told by numerous people even closest people that it is nothing, it is just a period pain, that it is in my head and that I am over thinking I honestly thought that I am crazy, I started to doubt myself, and my adequatism.

After two years going doctors eventually I have been sent to laporoscopy.

The day of laporoscopy.

I sat in room awaiting till time when the surgeon would call me in. I just thought to myself-is it me? is there something wrong with my head?am I making things up in my head that actually aren't there?

I was scared, I cried my eyes out. All sort of things went through my head.

But deep down I knew that I am not crazy, mentall women that makes up all those pain that I experienced!!!

Anyway, during the laparoscopy I have been diagnosed with endometriosis and they did burned endometriosis cells.

I have been sent home at the same day.

Now I am awaiting for another appointment With the surgeon to discuss my options.

To be honest I am so lost that I don't know what to think what to expect.

I am worrying about fertility, now and then I do cry and even I am not religious but sometimes I am lying in bed looking through the window and asking God to give me the chance to be a mum.

I just feel like no one understands me, any time when I am starting conversation about it I am getting told that I am overthinking and using google too much. It drives me mad.

Any advise anyone? Any suggestions?

How do you deal with it?

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8 Replies

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  • Hi so sorry your feeling like this and got messed around so much. I was the same being told for 5 years I had ibs and made to feel like a crazy person when I kept going to the dr and saying I knew it was more it turned out I have stage 4 aggressive endo and at the moment it's not responding to hormonal treatment and I too am desperate for a baby! Everyone says oh you'll be fine you'll be fine having a baby! But they just don't get it! Everyone on here is so supportive though and have really helped me! I hope your follow up goes well xx

  • Hi Amy I'm in the same situation as you. Nothing is really working what have the Drs said your options were?

  • Hi sandy I actually have my follow up tomorrow for my excision surgery so can tell you more then, at the moment I've just been told it's too aggressive and not responding to hormone treatments I've had so to do menopause injections for 6 months to see if they work. But I'm desperate for a baby and just had 4 hour excision surgery so want to ask tomorrow if I'm not best just trying now with it growing back so quick :( I'll let you know how I get on tomorrow xxxx

  • Ok good luck and keep me updated x

  • Hi, I'm so sorry to hear of all the trouble you have had. It is hard.

    I am in my 60s, now, but I began to have bad period pains as a teenager, and was constantly being told by family, GP, school etc that it was 'just' period pain. It was not until my mid-thirties that a woman GP said it was possibly Endometriosis - which I'd never heard about, before. I had been on and off the pill since I was 17, and I knew the pain was much worse when not on the pill. I finally had a diagnosis from a lap aged 38, but at the time all they suggested was to stay on the pill. Finally I had a solution - a mirena coil - but in my fifties! ... after much of my life on the pill (fortunately for me, I never wanted children, so my ability get pregnant was never tested).

    However, it is good that you have finally got a diagnosis, relatively young, and with luck you will get more advice when you have your meeting with the surgeon. It may be that fertility is not a problem - however unpleasant and painful Endo is, it does not always result in infertility - so try not to worry before the event.

    While you wait there are lots of things you can do. First, why not contact the group 'Endo UK' (see the link at the top of the page to their website; they 'host' this site). You can phone or email them - contact details on the site - and talk to their trained advisors. You can also read all the info about endo on their site, and I would recommend this, as you will feel better and so much more in charge of your own opinions and destiny when you know the facts - and not fears and rumours - about Endo. Also, read around on this site to learn as much as possible. Also, ask the 'Endo UK' people about any support groups near to where you live. There may well be a group of people like you, and near to you, who already meet and support each other.

    One of the things you need to find out about are the BSGE Centres. Ask the 'Endo UK' about them. If your Endometriosis warrants it, perhaps you should be seen by one of these specialist centres for 'Endo'. 'Endo UK' can tell you all about them, where they are, the nearest to you, and whether it sounds as if you should be treated at one of these specialist Endo Centres. they have the best Endo surgeons and other medics for Endo, at these BSGE Centres. Really, your GP should have told you about these BSGE Centres, so be sure to ask your surgeon when you see him - but try to talk to 'Endo UK' first.

    Finally, is there any one of your friends or family, who is more sympathetic, and who you trust more? Maybe they can follow this research and learning process with you, and learn about Endo for themselves. Then they can go with you to see the surgeon, and maybe to your local 'Endo' support group if there is one near you. I would also do your best to stay quiet with the people who are the most critical. They are not worth wasting your time and energy on, eventually they will have to see that they were wrong, as the outcry against 'Endo' (and the shabby way that women with it are treated) is getting louder.

    Good luck, I hope this helps.

  • Thank you very much that did help a lot

    And all my family lives back in my country

    There are Few people who I known for 5 years and lived together, I thought that they would stand by me but unfortunately it wasn't quiet like that. Long story cutting short they turned back on me at the point when i were at my lowest

    But that's fine, they had them own reasons for it I guess

    To be fair in those 2 years time I were quiet upset and angry with doctors for doing nothing and been saying quiet bad things about the GP's

    I didn't meant to disrespect GP's, or doctors I was just in situation were i was loosing hope that one day I will be able to live my life without the pain

  • My sympathies, that does sound very tough!

    I would re-stress that you email or phone 'Endo UK' as they can tell you of any 'Endo Support Groups' near you, as it sounds as if you need to talk to people who understand how awful endo can be. There is also a UK Facebook page on Endo, I can't remember the name 'Endo Re...' something. On there you can say (approximately) where you are and see if anyone lives local, and can give advice on local support.

    Maybe, also, ... try asking at various GP's receptions, or Community Centres, or local Women's Groups, or Feminist Groups, as they might have contact details. I'd try this if ' Endo UK' cannot suggest any local groups or support when you talk to them.

    Good luck.

  • Thank you a lot for your replays xx

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