Missed endometriosis advice

[Lou1011]

Hi guys im just after a bit of advice before i go to see my fertility doctor all guns blazing. I will let you know the story so far
18 months ago i got refered to my nhs fertility clinic after naturally trying for a year. At my first appointment i spoke to them about heavy periods and the fact i get an awful pain in my shoulder every month before my period...the dr laughed this off as nothing.
I got given a blood test and a hycosy scan at during the scan the nurse said she thinks i may have slight cysts bit would write it up in her report. I then waited 4 months to see the specialist and didnt have another type of testing done. Went for my appointment and he was so chilled out and said we cant find anything so here is clomid come back in 6 months...no mention of these apparant cysts so i assumed all was fine.
The clomid was awful i stopped after 4 months because my periods and shoulder pain were awful like the worst they have ever been. I wasnt seen once during my time on clomid not for scans or blood tests or anything.
I went back after 6 months walked into the room and the doctor said well looks like clomid didnt work you need ivf and because my partner had a one night stand 4 years before meeting me doctor sat there and said nothing more we can do you need ivf and you have to pay all in one blow like that. I got upset so he told me to give myself a break for 6 months and come and discuss ivf then.
Now...during that 6 months i was determined for someone to take this shoulder pain seriously as i believed it was diaphramatic endometriosis which as it would be on my diaphram wouldnt be something for the fertility drs to pick up. I saw a brand new dr in my practise and 100% she believed me she got me in with a specialist and i was having a laproscopy within a month. Now they did find endo but instead of it being on my diaphram it was all over my womb ovaries and fallopian tubes and the ovary one was leaking onto my diaphram causing the shoulder pain. So basically all along ive had one of the leading causes of infertility and without even checkig for this i got put on clomid which has undoubtedly made the problem worse. Ive had it lasered off my ovaries and womb but the tubes ive been refered to a specialist for. I have my 6 month appointment at the clinic on thurs and im fuming...they ignored my symptoms they didnt test me for much they put me on meds that makes my condition worse and all they kept mentioning was how much i have to pay for ivf...i could have spent 1000s by now on ivf and it could all be down to my endo. Should i have been tested for endo before clomid and should i have been seen more during the 18 months?
Sorry its so long everyone xx

Sorry to hear about your experience. I’m also going through undiagnosed infertility suspect I may have undiagnosed endo and been shrugged off so far as I don’t get much pain between periods. I’m sorry to say that your experience seems pretty common- if you don’t exactly match a tick sheet on endo they won’t refer you for a lap which is unfortunately the only way to diagnose it.

You should have been treated better, it seems in women’s health we need to advocate for ourselves and push and push to get the treatment we need.

I hope you will have more luck TTC now they’re dealing with the endo which as you say may be the underlying cause.

In my experience, they aren't very interested in finding causes of infertility but just hoping the (limited) treatment options work...

Unfortunately I agree that we need to become our own advocates...

Hi ladies. I went for my appointment and the doctor is so arrogant. He told me endometriosis has nothing to do with my fertility and when i asked for a 2nd hycosy to see if the endo on my tubes have affected inside my tubes his response was "what would be the point if they are clear u still need ivf" he also said he wouldnt let his own daughter have a hycosy as infection risk is so high (i then did researh and 4% got an infection in a trial with 0.8% getting a serious infection) i feel like he is trying to scare me into going with ivf yet i ovulate every month and my tubes were fine last year and my periods are normal i dont see why he is so adamant now the endo has gone why there is no chance (other than the fact he runs his own private ivf clinic and wants me to go there or is that me being synical? ) im only 27 and hes making me feel if i dont do ivf in the next 3 months il never have a baby yet the only thing wrong with my tests up to now was the endo.

A one night stand once upon a time means you don't qualify for IVF? That doesn't sound fair.
How do they even know about it?

I think you need a second opinion. Are there other hospitals in your area?

what has the 1 night stand got to do with it and how does the doctor know? Do you mean he already has a child?

mmzz
I'm guessing that the OP actually means is her DP is already a father.

OP
Sorry to hear about that. Maybe speak to PALS and get some more advice.

Of course. I didn't think of that.

Exactly as I said - they don't care about the reason, they care about the treatment... it's the same with most doctors in the fertility world, I've found. Even people without endo can struggle to conceive for unknown reasons (like me) and ivf can work (at around 30% a go).

I'm not surprised they won't repeat hycosy. They don't give these tests put like candy. They never did anything to check my tubes and your tubes were found to be clear last year.

I'm sorry you found him arrogant, but I think you're not going to get the answers you want anywhere... which is an incredibly bitter pill to swallow.

And honestly, time IS on your side, statistically speaking.

I had a similar experience although did have a lap before being prescribed Clomid and when that was unsuccessful we were shown the door to the private ivf clinic. At our first meeting there the doc looked at my husbands sample and said "well you're not going to get anyone pregnant with that" - so we had spent 9 months on Clomid with all the emotional baggage associated with no hope because they hadn't looked hard enough at the other half of our package.
We eventually had ICSI treatment and have twin girls. It's a crappy journey. Good luck OP. Give em hell!

I’m so sorry you had this crap experience. I had a great doctor on NHS in Herts, Dr. Borase, he suspected i has endo because he saw I had adenomyosis on an ultrasound and said they go hand in hand. He did the lap and dye on me and excised the endo and removed some cysts and we conceived right away after that. Endo definitely contributed to infertility but I think it’s not very well understood unfortunately. I think Dr. Borase does private consults too so I would recommend perhaps a second opinion from him or someone like him? Xxx