Hi from a newbie and any advice on laproscopies please! :)

Having my 3rd visit to the gyny this tuesday to get my 2nd GnRH jag and discuss getting a laprosocopy.

My background - I've been having problems with my periods every since I started when I was 14 and I'm now 20 (21 next month). It only occurred to me about a year ago that it MAY be endo. The past 3 years I've tried so many different contraceptive pills just to get some regularity and to help the symptoms. My main problem is they seem to get heavier every month. The pain is unbelievable, again seems to be getting worse each month. I also get massive clots. The pain is awful too, I've tried transexmic (?) acid and mefanimic acid along side various other painkillers and no relief. Then I got to the stage my periods were lasting 30 days long resulting in severe anaemia.I felt like i was going to pass out most days, so dizzy and faint and I had extremely bad heart palpitations and breathlessness. Even when my period wasn't here I was getting really painful abdominal pains and twinges, I even went to a&e as my mum thought I had appendictus. Things have helped with the GnRH jag though.

So I had my first internal at my doctor's surgery which was absolutely agony, I had expected discomfort but it was horrible. It didn't help I was nervous and tense so I knew I had to relax and calm down for going to the hospital. I had the next internal at the hospital and a speculum was used. This was excrutiating. I was crying, it took my breath away how much it hurt. I was prescribed norethistrone to take 3 times a day from day 5 to day 16 of my cycle. It made me break out but I continued with it as I so desperately wanted something to work. But I got major nausea from it and had to stop taking it as i physically couldn't eat (did anyone else experience this?) so at my last appointment i got an ultrasound and nothing was found which I was very upset about as I just want to know what's wrong but the registrar explained that endo doesn't show up in ultrasounds and the next step would be a laproscopy. In the mean time I got a GnRH jag. I got my period 17 days after the jag. It lasted 6 days, much lighter and hardly any cramp so I was very impressed. I know you can't get the jags forever though and they have given me alot of hot flushes which happen more frequently every day and are extremely unpleasant.

My main question is from reading up about laproscopies i'm rather shocked that so many people have had to have a few to get their endo diagonosed. I'm terrified at the thought I assumed it would be straight forward. Any tips or advice? Also it's actually quite good being able to type this all out and knowing that people will understand and take you seriously! The amount of times i've broken down from frustration is ridiculous!

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  • hey it certainly does sound like endometriosis to me hun, they will do a diagnosis lap and they will treat at the same time. having endometriosis is all about finding the right treatment which suits you best as everyone responds differently. I have tried prostap progesterone the mirena coil depo and three laps. good luck and hope you get sorted soon xx

  • Hi, I've suffered with endo for over 10 years, I'll be 30 this year. Like you, I have tried many different pills but to no avail. I've had 3 laparoscopies. The first 2 were to treat my endo and the last was diagnostic. I've just finished my 6mth course of decapeptyl SR injections and am going back to see my consultant in a few weeks. Hoping to be booked in for a hysterectomy then. The main problem with laparoscopies from personal experience is that they are only short term solutions. The endo comes back and then you're back to square one. I first found out I had endo after being rushed to A&E with suspected appendicitis, it was actually an ovarian cyst which had ruptured. It can take years to get a diagnosis. At firsta lot of my problems were put down to IBS. Personally I found the side effects from the GnRH a lot more bearable than the ones from the endo. Hope this helps x

  • Go for the Lap!!, I have just had mine. I recently had bad news with mine but I needed to know the truth so I could get help. I had some of my Endo removed with a diathermy and now I am recovering at home. May have to have major surgery on my bowel but needs must etc. I feel awfully ill but my mind is finally at rest :) xx

  • Hiya,

    There are lots of horror stories out there about people needing lots of Laps before being diagnosed but there are many, many of us who got diagnosed in the first Laparoscopy (like me).

    You are younger so whether the endo is visible is something you would need to discuss with your Gynaecologist.

    The bleeding all around the month sounds like a strange symptom. I know people who have changed their Birth Control a lot who have had similar experiences so this could have to do with the birth control being changed so often but I am not a doctor so I would ask a doctor who knows about Hormones about this (a gynaecologist may be more helpful that a GP for example).

    I would also get uber educated about the condition yourself. There are lots of books out there to read but Endometriosis UK have some great information to read through. I am currently reading a great book called "endometriosis and other pelvic pain" by Dr Susan Evans which I wish I had found sooner.

    Educate yourself and you have more power to make up your own mind about your treatment decisions xx

  • Thanks for the comments girls, they really helped! Like I said just being able to put stuff out there and for everyone to understand is AMAZING. It's such a complicated disease and so many people always get the impression you're putting it on! Ironically one of my friends who is most sympathetic is a guy! Minime1 you've been through so much, how are things now? Any improvements for you? Ginger83 I'm the exact same they thought I had IBS too! I'm really not surprised atall that endo is so commonly misdiagnosed. I was told to go away and eat natural yoghurt! Haha makes me laugh now, swear I could do some doc's jobs better! That's very true about the GnRH jag, I also get quite bad headaches from it too but again definately better than the fullblown hell of endo. DeeDeeOT what is diathermy? Is that when they laser your endo away? Aww that's such ashame, hope you recover fast and get your bowel op asap. That sounds absolutely rubbish :( Crystal_willow I definately do need to get up to speed with the condition, thanks for the tips! :) Such a complicated disease it's unreal. I think I saw a blog post from you saying you had been on the pill and that seemed to mask your symptoms? That was the definately the same for me as when I stopped taking any birth control my symptoms have just got worse x100! I don't ever want to sound like a moan as I know people have been through much worse and I have to say everyone on this site is amazing, we've all been through so much and I hope one day a definative answer is found for WHY endo occurs and WHAT can be done to treat it effectively and quickly

    Claire xxxx

  • Hi Claire,

    I too was diagnosed with endo after my first lap. Before diagnosis, I used to bleed constantly like you (3 months non-stop). I then had the mirena coil for 5yrs and all symptoms were reduced. It was only when I had it removed last year that I started getting symptoms again. I changed pills 3or4 times and the pain just got worse. My consultant recommended having the mirena fitted again at the same time as lap as it had previously worked for me. However, I have found the endo pain much worse since having surgery, my GP thinks surgery has either aggravated it or not all was removed. I'm due to go back to my consultants this month, but worried he will tell me to consider pregnancy (he did last time, but I'm only 24 and its not really an option). I keep getting fobbed off with that or to try stronger painkillers - I can't take codeine or tramadol as it makes me feel drowsy and I work full time)

    My advise is to keep going back to your GP / consultant as you know if something isn't normal for you. Don't be fobbed off with 'its IBS' or 'period pain'. This for is a great place for people to share their experiences and offer advice. I've found it very useful.

    Xx

  • Hi fleurbie!

    That sounds absolutely horrific! How did you have any blood left?! And I thought 30 days was bad! Yeah the mirena has been mentioned to me but only by a nurse who gave me my GnRH jag she just asked if I had been offered it and I said I hadn't. I've heard horror stories but then I hear great things about it. My mum got it (she's never had any gyny issues) as she was getting too old to take the pill and as she was close to menopause her periods stopped completely and she would recommend it to anyone! But I guess it's whatever suits the individual. Are you going to get another op to see if any endo was left do you know? I'm completely the same with the painkillers I just crash out 15 minutes after taking them! Very difficult when you want to have a life and have a job/ studying to do! Thanks for the advice and I hope you get better too! Good luck xxxx

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