Endo sypmtoms & male fertility issues :(

[Sheldon06]

Hi, this is my first time posting but I need advise. I'm 27 & have had many symptoms of endo since the age of 14, heavy, extremely painful periods which can even make me throw up, abdominal and back pain, IBS symptoms, constant tiredness, leg pain plus more. As a result of this I was put on the pill at 14 by my GP and no further investigations carried out despite there being a long list of females in my family with endo inc my mum & grabdma. My partner & I have been trying to conceive for 5+ years now with no luck. Last year our GP sent us for various investigatory tests, the outcome being that my partner has low sperm count & mobility. Whilst at Gynae I explained my symptoms & family history, I also expressed my concerns not only due to being unsuccessful in conceiving but also due to my mum being advised at my age that her endo was so severe that she only had at most a year to conceive. The gynae doc advised he beleives I do have endo however is unwilling to carry out a lap due to my weight. Due ti my partners fertility issues we were advised we would be entitled to IVF when I got my BMI down to 35. I'm currently down to 37 and almost there however in the meantime the guidlines for our NHS trust have changed to 30 for NHS funded couples. I feel so deflated. I have seen in the news that today the NICE guidlines have changed for Endo & am going to get back intouch with Gynae to insist on a lap. Do any of you have any advise or experiences similar to mine? Feeling really alone & worried I'm never going to get the chance to be a mum xxxxx

[emmab178]

Well done on the current weight loss. I haven't heard of them denying endo surgery due to high bmi but have seen the ccg criteria set at 30.

Sounds like you have severe endo possibly infiltrating the bowel (ibs symptoms). Is the dr you are seeing a bgse accredited surgeon or just a general gynae? General gynaes shouldn't be performing laps on suspected severe endo as they don't have the skills. You need a multidisciplinary surgery team on hand which is what they do at the centres. I'd advise coming at it the other way by going back to the gp with endo symptoms and the nice guidelines for treatment pathways in your hand and insist on a referral to a bgse centre. It doesn't help that your gp is completely misinformed on endo but if you educate yourself on what they should be doing and then ask why they aren't adhering to the guidelines it should be enough to get you seen by a bgse specialist.

[Sheldon06 in reply to emmab178]

Thank you. He point blank refused due to my weight despite my sypmtoms & concerns. He was general Gynae though & not BGSE. I wasn't aware of BGSE, have just had a look into it & we have a BGSE centre at the otherside of our city so I will be on with my GP & Gynae this morning for a referral. Thank you so much for your help. It always just feels as if you're having to work against the docs and tell them what they should already be doing for you which makes it 10 times worse when you feel like you're running out of time xxxxx

[emmab178 in reply to Sheldon06]

I never knew about bgse either and ended up with a general gynae who presented himself as an endo expert doing my lap. He should have seen how extensive it was and that it was up around my ureter and by the rcog guidelines knew it was beyond his skill level and closed me up and referred me to the bgse specialist. However he did not do that and I'm lucky that he didn't do more damage than the endo due to lack of training or skill.

As for not operating on you due to your weight. How ridiculous. If you had appendicitis would he just let you die? Ok there are more risks with a high bmi and surgery but if your quality of life is suffering then something has to be done. And you are making progress on it. At a minimum They could do an ultrasound or mri (even though not conclusive for endo) but would discover if you had any large endo cysts. But sounds like the fertility dr has no clue on endo (like most gps and gynaes) so first thing first get to someone who knows endo rather than deal with this clown.

Keep fighting x its what we have to do as endo warriors and remember these people are not God's, they offer you their opinion and that opinion may or may not be correct.

[sanchia46]

As far as I'm aware the BMI Limit has always been 30 for NHS Funding, so they may have mis lead you saying 35. 35 is the limit for private IVF. Apart from that you would have to go abroad.

In terms of your endo, keep a pain diary and google for one. They are still able to do a lap for you despite your weight, as my BMI wasn't great when mine was done, but it's the only way to diagnose endo properly.

[Sheldon06]

Previously the limit differed from CCG to CCG and thats what our was set at. They're now looking at bringing it all in line throughout the country which is why it's changed. I discusses it with my Nurse Prac who agreed it was misleading and that she's willing to support me in fighting it but I don't know if this will get me anywhere. Thank you I will google one and make a start on it. I have been keeping a list of symptoms just not as a diary form. The lap situation is really frustrating me as I'm currently awaiting another op (totally unrelated to endo) which involves general anaesthetic so don't understand why they'll do one but not the other xxxxx