To ask for advice RE gynae appointment- endo/fertility

[Maomee]

I have a really important gynae appointment this week- it's my first appointment for the issues I've been having for some time now. I am hoping for some advice for the appointment to avoid being strung along for months as they go through the motions. I'd much rather see them act faster especially given my wish to conceive and my age (34).

The main issue is struggling to conceive, this is what triggered me to see the doctor as it is just shy of one year of aTTC without even one BFP in that time. My GP suspects endometriosis as I have always had quite painful periods and some bowel issues around my period too (pain but not every cycle). My periods have also become noticeably heavier in the last few years. I had an ultrasound last year to investigate bleeding in the middle of my cycle and that only found one small fibroid. It also showed one of my ovaries was in the cul de sac but none of the doctors seem to think that's important, even though from what I've read ovaries don't tend to be seen there unless there's an issue.

Anyway, I'm hoping for some advice on how to handle the appointment. I'll be attending with my partner as requested in the appointment letter, and we will also be bringing his semen analysis (which showed good results). I have also printed out the transvaginal ultrasound report from last year. If you have any experience of the above issues, from what I've said, do you think I should push for a laporascopy (since this is the best way to check for endometriosis), or something else? Do they usually hold off putting you straight on the list, or are they more likely to if you're struggling to conceive? Is there anything else I should be aware of before I go? I just want to be as prepared as possible.

I'm sorry you are going through this. I ended up paying privately for fertility testing due to a very slack GP ( by that point, 4yr TTC and all he did was a D21 blood test. Because it was normal, he refused any referral! If relevant, I don't have any living children.)

I didn't have the same issues and don't have endo, but things I'd do:
-take along a list of any medical issues either of you have ever had
-take a list of any meds either of you use
-I was asked when my periods started, my usual cycle, any history of STI's/PID, any previous pregnancies etc
-Our job roles and if there had been radiation exposure or other high risk jobs
-We were both asked about drug use including steroids

I think they took urine samples for STi's checks, blood tests for thyroid, sugars, FBC, AMH and other things. I was also sent to a HyCosy a week later.

For your own info, I'd also check the rules regarding IVF in our area. Some don't provide any at all, some only if BMI is within a certain range, some only if under a certain age. Not saying you will need IVF, but IF you do, its best to know where you stand now.

I don't know, but would 'assume' they'd do all other testing before a laparoscopy. Take along a list of questions you want to ask also. Wishing you all the best x

I had an MRI followed by a laproscopy to get a diagnosis, and the laproscopy helped with understanding exactly what was going on inside - the various scans only go so far. Unfortunately invasive surgery is probably the only way to go for diagnosis - there are some new non-invasive tests being developed but all they will indicate is whether you have endometriosis, not the actual state of your internal organs. Mine was much worse than any scans had indicated and almost certainly the cause of my secondary infertility (sadly too late for me to do anything about it).

I wouldn’t only focus on the fertility point because people do suffer severely from endometriosis and still get pregnant and you don’t want them fobbing you off on that basis. I would package it as one of the things that needs to be tackled, along with the bowel symptoms and heavy periods you’re having.

Write down your questions before you go, and get your partner to write notes whilst you’re in there. Good luck

I cant say in terms of fertility, but just looking at the endometriosis side of things its worth asking to see an endometriosis specialist rather than a gynae.
They have just released new tests which should be available on the NHS which I believe are called endosure and endotest. You may be able to access those via a GP especially if they believe this is the case.

https://www.bbc.co.uk/news/articles/c4gyy8jdn3eo

This was a recent article about the tests potentially available

It may or may not be of any help but if you are on instagram search for cal.wilson.gynaecology and scroll through his posts.
He’s a consultant gynaecologist based in York and did a post recently about first gynaecology appointments and how patients can make the most of them, and there is also a fair bit about endometriosis.
Dont be put off by all his recents posts about the Grand Prix - he makes no apology for being a lover of fast cars.
No idea why he started to pop up on my instagram but I’ve learned a lot from his posts.

I had ultrasound and MRI before they decision was made for laporascopy.

7238SM's list above waa very similar to my experience.

Do you track your periods on an app by any chance? Length, flow, flooding, symptoms, painkillers etc.

My gyn said it helped show impact on daily life which was important factor. I was only in my early 20s and got the impression they would have waited longer for surgery only for all of the evidence of pain etc.

I use free app My Period Tracker. If you aren't already using one, it might be helpful going foward.

I would also suggest writing down any questions you have so you don't forget them.

Ask them to set out possible next steps too.

Also make notes of what they say as there'll probably be a lot of info.

If you do need a laporascopy in my experience it wasn't too bad.

Hope all goes well for you.

Thank you for the replies, it's really useful to hear especially those with experience of similar appointments.

@7238SM I'm so sorry to hear about your struggle too. Did they ever get to the bottom of why you couldn't conceive? This sort of issue is so frustrating as it can both so mysterious and just makes you despair at the same time.

I'm so sorry to hear about your struggle too. Did they ever get to the bottom of why you couldn't conceive?

No. My AMH was very good for my age, tubes clear, very regular cycles, semen good and no cause for sub-fertility found. I got pregnant naturally twice and once via IVF- but lost all 3- even after seeing heartbeats. I had 2 tested and they each had a different genetic issue which I was told was due to 'old eggs'. So although I had a good egg reserve, they were of poor quality. We TTC over 10yrs and although we have no living children, we have a good life. Just different to what I'd always expected. Wishing you all the best though x

That sounds so hard especially your losses after heartbeats. I'm so sorry. Do you feel that going through the testing at least helped you find closure with why it wasn't working?
I'm so glad you feel peace in your life after what must have been such a difficult time while TTC.

Although we are still relatively early in the journey (with it being almost a year and only first few tests done) I already feel that although I would like children, I could still have a happy and fulfilled life without them. I think my biggest issue would be feeling guilty because the fertility issue probably lies with me since my partner's semen test was very good, but that's a bit irrational really, as we both want children and neither of us have any control over our fertility.

Do you feel that going through the testing at least helped you find closure with why it wasn't working?

Do you mean fertility testing or genetic testing on the foetuses? The fertility testing gave me hope that nothing was wrong. The 2nd genetic test (on the 3rd foetus) just re-enforced that my eggs were of poor quality. I worked out that by then, 10yrs of TTC cycles and several rounds of IVF likely equated to about 140 eggs which had the potential to be normal, fertilise and start a healthy baby- but none did. I started TTC at either 32/33 so at the time I didn't feel old, nor did I ever expect to struggle to TTC.

I'm glad you are getting testing done so early on your TTC journey. In hindsight, I should have changed GP's much sooner and pushed for referrals. I wasn't on MN then and had no close friends/family to ask what was normal.

I mean that with all the testing, of fertility and your foetuses, do you feel having more information to understand the issues helped you process it? It really sounds like you did all you could do, and you also took on a lot of information about what was going on. It's sometimes easier to think 'if only' in hindsight, but really if you didn't know about what could help then you couldn't have done more.

I feel like I've read all I can about endo and other possible causes for our difficulty conceiving, and although it's helped me understand what may be going on, it's also left me feeling quite overwhelmed and very frustrated with not being able to do much about it. I suppose I'm also kicking myself a bit as deep down I always suspected I may have endometriosis due to the pain patterns but I pushed it to the back of my mind, both because I was hoping it wouldn't affect my fertility but also I've had bad experiences with the health service for other issues so I was less willing to deal with them even more.

I track using OPKs and my cycles are very predictable using the apps. I think I'm going to focus on the difficulty conceiving in the appointment but also mention the pain especially bowel related as that seems to be quite a big indication that it could be endo. I think (from the information I've seen so far) I really want at minimum an MRI from this appointment, but if they offered a laporascopy I'd be happy as it could at least rule endo in or out completely. I have heard that they can be wary about doing one as it could potentially lead to more scarring, but I imagine that may depend on the skill if the surgeon too. I suppose there is always a risk no matter what though.

I think it depends a lot depends on your trust’s procedures. My friend didn’t have an MRI before laparoscopy. I had an MRI before. We both had endometriosis removed during the laparoscopy (ie it wasn’t just diagnostic, they did the excision there and then)

My friend was told 18 month wait but it turned out to be 7 months. I managed to get mine privately. I would ask your GP about getting onto the IVF waiting list too whilst this process is ticking along, just in case you need it

My consultant said the official statistic is 1 in 10 women have endometriosis but it’s actually more like 1 in 3 or 4. It’s getting diagnosed more because women are having children later and it progresses with age, so it gets picked up in the context of fertility investigations more these days.

I completely understand the fear of being fobbed off - I do feel like they’ve lost the trust of so many of us, I can’t face asking for help either.

For the appt focus on the pain and symptoms you have as well as the fact you have been TTC. They shouldn’t fob you off. And it sounds like you’ve got a great GP in your corner which makes a big difference. Good luck xx