Could it be endometriosis...?

[Lainey4]

Hi, bit of background - I'm 40, I've been trying to conceive for about 4 years. Started IVF treatment 2 years ago and had 2 failed rounds with the last one being June last year. Since then I've had super super painful periods, almost to the point of passing out with the pain. I get pain in my right upper arm and shoulder too. I've also had a few instances of bleeding between periods.I went to my GP last month and have had blood tests (all normal) and an ultrasound scan (satisfactory apart from a small cyst on my right ovary). Tbh my GP was a bit useless and basically asked me what tests I wanted to have done!

Prior to trying to conceive 4 years ago I was on the pill for about 18 years so had a regular cycle and cramps but never pain. I can't recall what my periods were like prior to this.

During my ivf rounds I had issues with my endometrium being too thick, I had a biopsy which was normal.

I'm now wondering if I could possibly have endometriosis? Do these symptoms sound like it? I'm now wondering if this could be why I have failed to conceive? Although I am aware that my age could have something to do with this too.

Is it worth going to see maybe another GP and raising my concerns or should I just suck it up and continue with the paracetamol every month and just get on with it?

[Starry1977]

It all sounds quite likely. Nothing really showed up on my ultrasound apart from thick lining and small cyst. I wasn't diagnosed until 44. I tried to conceive my second child from about 37 but I never dropped on I put it down to age and my hubby working away. My periods got heavier more painful plus other issues like constipation etc. I thought It was perimenopause as by this time I was 43. I only had a lap because the cyst was 4 cm. Anyway I was diagnosed with stage 4, frozen pelvis and and a later MRI showed ademenoysis. I had it in a lot of places and still have it near my colon which couldn't be removed at the time. I'd maybe request an MRI as that can see the things like deep endo and scaring etc. hope you get some answers

[Lainey4 in reply to Starry1977]

Thank you so much for replying.I think I'll make another GP appointment and ask for it to be investigated. I would still love to conceive but time's ticking and if this is endo I might need to rethink a few things.

Thanks again

[dinglet]

You sound very similar to me. I am 38 and have been trying to conceive the last 5 years. I have had 3 failed rounds of IVF, 11 eggs total collected and fertilised but only 1 of those ever progressed to good quality.

I was on the pill like you for years and never had much problem with my periods, but since I have come off it I have had painful periods that would stop me in my tracks at least one day a month. I had ovulation bleeding and sometimes other spotting mid cycle. I also had hip pain and bowel issues which I original thought were unrelated. On ultrasound scans in clinics they diagnosed a small fibroid outside my womb. I had asked the 2 clinics I went to for IVF treatment a few times could I have Endometriosis and I was fobbed off saying symptoms more likely related to fibroid and IVF gets around endometriosis (which i have now learned is definitely not the case). Also I found it would take me about 3 months to get back to normal post IVF treatment (which I also now know that IVF make endometriosis symptoms worse due to increased hormones).

After chatting to friends who were diagnosed with Endometriosis and comparing symptoms, while also having a long longer mid cycle bleed and ovulation pain, I booked in with a Gynae surgeon they had both seen. In my head I just wanted to get the fibroid out.

I was seen by him in October (less than a week after my GP referral). We went through all my history and previous scans. He had said that the fibroid should not be causing me pain or issues as too small and was querying if endometriosis, however did say my best option was to have a diagnostic laparoscopy to see what was going on. While he was there he would also remove the fibroid, check my tubes and womb and do an endometrial scratch, while also removing endometriosis if he found it.

I am not 2.5 weeks post surgery. He found stage 3 endometriosis which he removed along with 2 fibroids. He has now as he said 'returned the anatomy to normal'. I am for the first time in a long time now hopeful going forward with fertility. However I am quite angry with the fertility clinics who never even suggested this, I had to go look for it myself. I have been reading a bit since and a friend with endometriosis sent me this very good research paper from the US. mdpi.com/2077-0383/13/2/444

It shows in a study that 90% of cases of unexplained infertility had endometriosis. Other older papers suggest 60% yet IVF clinics don't even explore this.

I plan to keep an eye on my AMH levels post surgery as I think my reserve and egg quality will now improve post surgery due to the decrease in inflammation from Endo which I believe was the reason our egg quality was so poor.

I really hope this helps you. Its a long struggle. I paid privately for gynae consult and my health insurance covered the surgery but I feel it was so worth it rather than wasting more money on IVF that would go no where until Endo address.

[Lainey4 in reply to dinglet]

Gosh you've really been through it! Thank you so much for sharing your experience. A lot of what you've said really does ring true for me too. We're just considering a paid round of ivf but I think we'll put it on hold now until I get this sorted out.

Thanks again and good luck to you x

[KTF21]

I am 43 & have suffered for years always told just “painful periods” which have got worse with age , fast forward to first failed cycle told they had found a chocolate cyst on egg retrieval so went to Drs & started with ultrasound etc.. but to see a gynaecologist after this initial process would months so went private impatient due to age & was diagnosed with stage 4 it gives me answers & if I was younger would have treatment before another round but due to my age we decided the delay of that would outweigh having it currently

Good luck with getting answers 😊

[Knbd]

I had IVF 16 years ago, instigated for male issues. Previous to that I had been on the pill, however twice I came off it I had alopecia and suffered with the hormones.

Prior to this I had 2 really painful episodes one of which I ended in hospital - they said it was wind….

During ivf, I suffered OHSS and they also said I had a nice thick womb lining….. because it was male reasons we went for they didn’t really check me.

7 years ago I went to the dr with painful periods - making me sick, my dr ran tests and I had a high ca125 level ( turns out it wasn’t that high and this is an indication of endo.)

Waited 2 years for laparoscopy which was done by a general gynaecologist who found a fibroid and thought Adenomyosis so sent for an mri and confirmed.

Fast forward to today and I’m almost a week past a full hysterectomy which showed I had fibroids distorting my uterus endo around rectum etc.

I’m not sure if this helps or hinders or makes sense! But I think what I’m trying to say is we know our body.

Good luck xx