Confused and desperately need some advice please :(

Hi there, I'm new to this forum and need some advice. I've had extremely painful periods since my periods started 15 years ago. I have constant lower back pain, nausea, fatigue, bad pms, spotting between cycles, headaches, shooting pain when going the loo when I'm on my period, I can't use tampons as I get sharp pains when pulling it out (sorry tmi) , vaginal aching during ovulation and my period, IBS lots of gas bloating etc... I'd never heard of endometriosis until today when a gynaecologist said he's 99% sure I have it. I've just googled the symptoms and I do have a few of them, I was diagnosed with dysmenorrhea when I was younger and put on the pill so I assumed it was all the norm. I'm just a bit confused as I've conceived two beautiful children within a couple of months and I've just read that infertility is a big issue with endometriosis, and pain during sex? The only pain I have during intercourse is a sharp pain that lasts a couple of seconds then goes away but I've never thought anything of it. I've got to take the contraceptive pill for 3 months without a break then go back to see the consultant. If my symptoms go then that will confirm endo. Has anyone else had a similar experience? Any help at all would be appreciated as I feel a bit overwhelmed today xxxx

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11 Replies

  • Hi Hinesm, endo affects everyone differently so dont be worried that you dont have fertility problems - thats great! Unfortunately endo can only be diagnosed by a surgical proceedure called a laparoscopy. You may want to discuss this with your consultant. You also may want to consider asking for a referral to an NHS endo specialist if your concerned. Theres a list of all endo centres on the BSGE website ( British Society Gynae Endoscopy) Also have a look on the Endo UK website for uour local support group. Endo UK have a helpnline you can ring for more suppot too - the opening times vary so check yhd website. Also there are liads of facebook suport groups including UK ones. I can recommend one called EndoMetropolis which has a lot of files to read as well as input from specialist endo surgeons. The main thing to know is you're not alone :-) x

  • Thank you so much for your reply :) The gynaecologist mentioned having a laparoscopy but I said I'll see how the pill goes first as I remember the pill easing symptoms when I was younger. I'm 28 now and had my last baby 11 months ago, the symptoms went when I was pregnant but have returned twice as bad! If I don't get on well with the pill I'll consider the lap. I'll have a look at those websites :) I think it's the fertility issue making me wonder if this is all in my head and I just have painful periods and IBS :/ that's why I've posted on this forum to see if anyone else with endo found it easy getting pregnant xx I don't want to upset anyone with fertility issues, I'm just a tad bit confused and taken back by the diagnosis. I've got to have a scan next week as well to make sure I have no cysts xxx

  • Your welcome :-) most endo ladies with less severe endo are able to concieve without problems apparently. It most certainly isnt in your head - endo is different for everyone so its really difficult to not compare yourself with others but if it helps all of what you've mentioned fits with endo. I'm not sure if thats good news or bad news but your symptoms definately fit. I'd really recommend ringing endo uk :-) take care xx

  • Thank you so much for your help! X I think I've just panicked a little because I've never heard of endo before, well I've heard of it but just don't know much about it. Thanks again :)

  • Dont appologise :-) it's scary stuff & I can absolutely understand that its shocked you. You're just starting to get your head around it. There is information out there it just takes some finding lol. Feel free to message me anytime if I can help direct you to anything. Its scary but its about starting to gather info & knowledge to that you can make the right decisions for you :-) xx

  • Hi,

    Just noticed your post, and I can totally empathize. Endo is a pretty scary proposition - especially as so few people seem to know much about it. You are definitely not alone

    I have Endo, diagnosed some time ago. It is always useful to know that every woman experiences Endo in a different way. Some have no symptoms whatsoever, whilst others do have symptoms, which may vary dependent upon the amount of Endo and the position where it is situated. Quite simply, Endo is where the tissue that lines the womb grows in the wrong place, outside the womb. It still acts like womb tissue, and bleeds during every period. Sadly, there is no place for the blood to go, and this ends up leading to inflammation and irritation, as well as possible scarring.

    Endo can only be diagnosed by a procedure called Laparoscopy. This is because it may not always show up on scans. Your symptoms may be an indicator of having Endo, but this is NOT always the case - there are many other illnesses that have symptoms VERY similar to Endo. Therefore, if Endo is suspected, its diagnosis can only be confirmed by Lap.

    You are very lucky that your fertility has not been affected, as Endo can cause problems with this. However, many infertile women (like me) have severe Endo. Others with less severe Endo are still able to conceive and give birth. Like I said, symptoms vary from woman to woman.

    I would advise, maybe, that you keep a DIARY of all your symptoms, and take this to any medical appointments with you. It can help in a lot of ways - help you to remember things that you may forget at appointments, help you if you are nervous, and help you and your Doctor to spot patterns in your symptoms. Also, try to remember whether any other female relatives in your family have had Gynae problems (as there is research that shows that women with Endo are more likely to have other female relatives with similar problems).

    DO make sure that you discuss matters regularly with your Doctor(s). Ideally, you need to know ASAP what is causing your symptoms. The PILL is sort of fobbing you off. It does NOT cure or get rid of Endo, it simply MASKS symptoms by temporarily stopping your periods. If you DO have Endo, it is better to be certain of this right away. Then you can start to discuss proper treatment. It's often a good idea to ask for a referral to an Endo Specialist, as many basic Gynaecologists do NOT know enough about it, and can give less than appropriate treatment.

    Try to get clued up so that you can ask the right questions at appointments. Just a little suggestion regarding info:

    1. Endo symptoms (details them all by area of the body) -

    2. How to locate an Endo specialist -

    Good luck with everything, and hope this helps.

    All the very best,

    Elaine Ellis.

  • Thank you so much for all that information, it helps a lot as there's quite a lot of information to take in when reading up about it online! X you have both made it easy for me to understand :) I had a cesarean section 11 months ago and there was a few complications which is why I'm so hesitant to be put through any more surgery. I've felt quite lightheaded the past couple of days and I'm having a mid cycle bleed which has gone from brown streaked discharge to more of a light bleed which lasts a couple of days (I'm ovulating at the min). I'm due to have an ultrasound scan on tues next week so if that's all clear I'll give the pill a go and if it helps I'll stay on it for a couple of years, come off it and if symptoms return il consider the lap. Obviously if there's cysts or anything else found on the scan and I need surgery then I'll have to have it. Xx thanks again for all the info it's very kind of you both

  • I have all the same symptoms and Thursday have been told I may have a kidney problem so I suggest you talk to gp. This was only diagnosed by MRI, my previous blood tests have come back 'satisfactorily normal' hope this helps xx

  • That's interesting, see it could be anything couldn't it. I think that's why they want to give the pill a try as if this eases symptoms then there's a high possibility it's endo. If symptoms persist then they might look into other possibilities X that's why I'm so 50/50 about having surgery because imagine I put myself through that with two young children to look after and I didn't have endo. But then at the same time I can't bear the pain and fatigue/nausea etc.

  • Hiya :-) remember every one of us is different with different situations so you can only do what is right for you at the time. Reading & gaining understanding just allows you to feel more in control to choose what is right for you rather than simply be told by a doctor what they are going to do to you. As & when you have a lap it needs to be you in the control seat. XX

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