In process of being diagnosed

Hi, I am new to this site, I don't always know who to talk to. I have been told it is likely I have endo, but only just going through examinations etc. I haven't been diagnosed but I have had symptoms for 9 years. I went on the implant because my periods were so painful. So for a long time then my symptoms weren't as bad. I came off it last summer as my husband and I were talking about starting a family. Then it all hit me; horrid pain, bleeding, painful sex, bloating... i think it had all been relatively controlled until then. So I finally went to dr, she said possibly endo from the start. Had a Colposcopy, now been waiting weeks for my date for a scan. Waiting is so hard, I have been researching and the more I read the more I seem to tick every box. I am worried and fed up of the people I have told, with responses being 'you don't know yet', 'stop worrying', 'they can do miracles these days', 'it wouldn't even mean having children might be difficult'.... all I want is for someone to understand (hubby is great but you know what I mean) and perhaps be in the same stage as me? Waiting... Or people who have been at this point, even without an official diagnosis being pretty certain what is happening. I know my body and i know it isn't right. I guess I am just looking for someone to understand. Rose

12 Replies

  • I'm at a similar stage, I've been experiences pains for years very on and offand always have painfull periods and get very uncomfortable after sex, now I get pain daily, no routine to the good and bad days, apart from feeling better for a few days after a couple of real painfull days at beginning of period, I've been referred to my gyne and he said it sounds like endo or adenomyosis, I'm now waiting for a laposcopy, what are you waiting for, you said scan, what type, endo is only diagnosed for sure by a laposcopy, so if they havnt referred you for that yet, you need to push for it. Xxx hope you get some good days soon,

  • It is an ultrasound, they haven't told me anything, it is only through a good friend with endo that I learnt this scan is very unlikely to pick it up. I guess it is just to rule out other things? Do you think I can just ask to have a laposcopy? I wish I could see a specialist but maybe I do need to be asking and pushing more? Thank you so much x

  • Hi. I was only diagnosed mid November last year. Years of pain, and past 18 months of agony...bloating, bleeding etc but you are not alone. It's a daunting time you're in at the moment, the wait is the worst bit. The best bit in the wierdest way is the diagnosis. It's not unusual for you to fret before the surgery...."what if they don't find anything?" went through my head constantly for the month prior. Was such a huge relief to finally get that diagnosis. Hang in there.

    The piece of advice I would give you, is to push for a laparoscopy. It's the only way way they can see endometreosis, which is what I had. A scan won't show it up necessarily.

    Here any time you wanna chat xx

  • Hi, thank you for sharing. I am realising that I need to push for the laparoscopy. I guess see what comes back from the scan, I gather it is to rule out other things? I am on the mini pill which has started helping with some pain etc, should I come off it? I guess I should talk to them about that too... xx

  • I wouldn't come off mini pill just yet, if its helping with pain and relieving symptoms I would continue with it for now. Talk to your gyny re best option. Scan will rule out other things, like cysts, which I have. xx

  • Dear Rose,

    I understand you are going through a tough time right now and as the ladies have said, there is a sense of relief (of sorts) when finally you have answers to your questions and thereafter a plan for the way forward.

    I would like to give you some information that may be of help prior to diagnosis. Please take a moment to have a look at the following:

    (The information pack details some pain management options too (page 8 onwards))

    Ahead of your appointment with your specialist it may be useful to complete and take along with you the following:

    Endometriosis UK offer support, not just via this forum, but also by way of face-to-face support groups that are run across the country by trained volunteers who have been 'touched' by endometriosis themselves:-

    Also, there is a freephone helpline, again run by volunteers where you can talk in complete confidence about your experiences and this suits a lot of people who prefer not to attend a face-to-face meeting:-

    0808 808 2227

    It is available all this week from tomorrow:-

    Finally there is also the option of online support meetings using Skype (no webcam is used to ensure anonymity). These are usually run once a month and are useful for those who are unable to find a support group in their area or those who cannot get out to attend one:-

    (the next one being for the newly diagnosed on 9th February 2015, at 8pm)

    The thing to remember is that you are not alone. There are many women and girls in similar circumstances and with similar experiences.

    I wish you well.

    Take care,

    Simonetta, Endometriosis UK

  • Simonetta, thank you for being amazing, this site is amazing...

  • You're welcome Rose. Good luck with everything.

  • Hi Roseh275

    I hope you get your diagnosis soon. As previously said the scan wont show endo.

    Sometimes you have to play the game with the doctors. I went through 2 years of internals/swabs/pregnancy tests and trying different medicines before a new doctor said she was referring me to gyne as she thought it could be endo.

    Start a diary, record your symptoms. When your scan comes back insist on a referral to gyne (in particular a specialist in endo).

    My trouble started 2009, I had a lap & treatment in 2011 but the problems started again a couple of years ago. The worst thing for me is friends saying "bloody hell....don't you have this sorted yet" or "surely there must be something that can be done to help you". No-one really understands except us what we go through. That 2 year period of not knowing was awful and I think all of us on this site are either in your position of have been.

    Best of luck x

  • Hi dabba76, it is awful how you and others have had to wait so long before getting a diagnosis. It sounds like a laparoscopy is a last resort, which seems unfair when it is the only way to actually find out. I am worrying that they won't find anything... also because I have spent about 7 out of the 9 years on contraception which has decreased symptoms, that I am okay because it is being managed. But I am so worried that it gets worse over time and I should have gone to the dr years ago x

  • Hi Rose, my name's Hollie. I'm at a similar stage to you. The GP's have told me I have endometriosis but I'm waiting to see the gynae consultant to have it confirmed with a lap or scan but that isn't until April.

    I'm in so much pain at the moment work is becoming impossible. I have a really supportive boss but feel so guilty coming In Late and leaving early. I think I fell asleep at my desk yesterday too =S

    I feel a bit abandoned by the doctors, they told me I have it and that was it. I even had to go back for pain killers.

    its a bit scary knowing somethings wrong but nothings being done yet, what if it's getting worse. I'd just like to know a bit about what's going to happen. Or any advice on how to cope with the pain until april.

    everyone I've told is really nice about it but I found this site really comforting to know Youre not alone. Even if you just read the stories instead of writing anything.

    I hope you get to the next stage soon.

    Hollie x

  • Hi Hollie,

    I am sorry you are going through such a difficult time. Your situation sounds very similar, though I had my scan today. A lot of people have told to me to go back and push for something to happen - it isn't fair you being in so much pain you can barely work. My friend went private and she is getting really good treatment but it costs an awful lot.

    Maybe find a GP who actually tries to get the ball rolling faster?

    I had the scan today and they found blood on my ovaries. That was all they said, then it was like see you later, make an app at your GP for next week... not had good experiences from health professionals so far.

    I hope you get somewhere quicker than expected x

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