Coping day to day, fears frets and trying to get on with life!

Being new here I have spent an awful lot of time in the background, reading as many posts and questions as possible trying to absorb new information and learning as much as possible.

I’m currently waiting for my first diagnostic laparoscopy, so please do excuse me if I seem like I’m either babbinging or wondering around like I don’t know where I am going (metaphorically speaking)

I have suffered, mostly in silence for the past 12 years and am so pleased to be finally (hopefully) getting some answers. I was told that I just had heavy periods and suffered from dysmenorrhoea for the past 10 years, so always felt quite silly when I had to take days off work at the time of the month, I used to think “gosh I don’t have a very high pain threshold at all” when now I realise actually I do! I’ve also been fobbed off with IBS for most of this time as well, I therefore changed my diet to cut out wheat and dairy.

When my pain started to become so unbearable about 2 years ago, and was constant throughout the month my GP finally sent me for an ultrasound with revealed a 5cm cyst on my right ovary. This was left for 6 weeks to see if it grew and on my second scan it had in fact disappeared. (I think this is pretty common) the pains still carried on none the less and I was then prescribed codeine to deal with it.

A few months later I went back to my GP explaining that the pains were actually getting worse not better, she then referred me to a gynaecologist. He was nice, although pretty condescending… he explained that the chances are that I have Endo and that should he perform a laparoscopy and find endo, there was probably little he could do and would recommend that I simply go on the pill taking the packets back to back to 3 monthly cycles. He “sold” it to me in the respect that its just cutting out the whole “risky” operation part and going straight for the treatment instead. I have to say the pains did subside for the first few months, but have since returned with a vengeance and added urine, bladder and kidney infections! (I’d never suffered from them before and trust me, i’m clean, I pee after sex – when i do have sex because lets face it, being in constant pelvic pain doesn’t really put you in the mood for it!)

So I now find myself, after having seen another (female) gynae on the waiting list for a laparoscopy. I have found this site extremely useful, and will start on the endo diet in the next few weeks – it looks similar to the previous non wheat/diary diet I mentioned.

I am of course worried about being diagnosed with endo, and the potential seriousness of the diagnosis. Both my partner and I are keen to have children and both consultants I have seen so far have advised us to start trying as soon as possible. But something i am even more worried about is if they go in and find nothing, if I’ve been though all of this for nothing! What are my other options? What else could be causing me so much pain?

Sorry for the very long post, it’s been very cathartic to write my story down (although a slightly abridged version)

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  • i only got diagnosed last january so i remember exactly what your going through. the first time i met a gynae who took me serious and referred me for a lap i nearly cried. it was soo emotional to finally be taken serious and not to be told im being a silly little girl.

    although my pain had become constant by the time i had my diagnostic lap despite being in the pill i only had mild endo so dont be freaking out that it may be worse then that cos the pain is so bad.

    it does sound like endo you seem to have the same history as me anyway.

    oh btw i prefer male doctors when dealing with my endo. i just find them much more sympathetic i feel women doctors just think it cant be that bad cos they deal with their mild cramps just fine. i think most women on here prefer a female doctor but im yet to come across a nice one who takes the pain im going through seriously enough. thats just me tho.

    as for your pain i started taking paracetamol four times a day every day and codeine with it. i find it a much better way to manage my chronic pain then just taking something when my pain is bad. ive more energy because of it and coping much better.

    anyway good luck with it all, feel free to pm me if you need to xx

  • Hi, your experiences almost mirror mine, including the urinary infections and disappearing cysts. My female GP kept fobbing me off, even though the pain persisted and eventually referred me to a Gynae (just to get rid of me, I think!). I was prescribed Prostap for awhile, which helped, then the pain came back and my new Gynae said I could try various hormone treatments or have a lap. I chose to go with the lap - I hate hospitals and the thought of surgery, but I really wanted a definite diagnosis, afterall, how can they treat you properly if they don't know for sure whats wrong? So I now know its definitely Endo, which prompted me to find this forum and I now know so much more than I ever did before. I think for that reason alone, I would recommend the lap, but of course its your choice!

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