Struggling with infertility diagnosis and miscarriage.

[Parrots83]

Hi there. It’s my first post 👋🏻 but I’m finding this whole thing very hard and thought others might be able to offer some understanding and comfort.
My D.H. And I had a miscarriage in February, after about 4 months of trying (properly, kits etc); it was so painful I ended up in hospital on morphine. I’m still sad about it but more so about the future. Long story short I’ve since been diagnosed with stage 3 or 4 Endometriosis. More likely stage 4. I’m currently in the loooooong wait between appointments to find out what the medics think need to happen before we can T.T.C. Again. Most likely I.V.F. I’m so angry frustrated and feeling like we’ve a mountain to climb before we even get to I.V.F. Which with my condition chances don’t seem good. It’s an effort to get up , go to work, socialise. I’m doing it all but going through the motions half the time. I’ve never felt so angry and bitter before it’s awful. Every week another friend announced their happy news and I just want to go and live on an island in Orkney where there’s no people. Hubs is wonderful but he’s grieving and trying to stay strong for both of us. I guess I’m just wondering if anyone has any words of advice of support especially with stage 4 Endo.
Much Love, E

Why do you need to go to IVF? Conceiving within 4 months of trying is good. Miscarriages happen for a number of reasons but in the first trimester it’s most commonly due to a genetic quirk: your next pregnancy is statistically likely to have no issues.

Even L4 endo doesn’t necessarily mean you need intervention.

Hi thanks for reply. I.V.F., because That’s what I was told by the Endo specialist. He believes the Endo caused the miscarriage. It’d be great if I don’t need it. I’m also 35 and not getting any younger, 36 in a few months so I’m getting twitchy.

Did he say how IVF would prevent another miscarriage if it's the endo causing it?

Exactly how did the endo cause the miscarriage - did they explain? Not sure how IVF is going to help if the endo is causing miscarriages - it’s the endo causing ovulation issues that can be fixed by IVF. Suggest you ask a lot more questions. That you got pregnant naturally is great; it means your ovaries work!

I too don't understand. Conceiving in four cycles of natural ttc is actually faster than average! It's still shit that it ended in miscarriage...

I'd suggest you need a lot more info!! What did they suggest as next steps? How did they diagnose the endo?

Something just isn't adding up to me!

Yep, another who does not understand that at all. Completely clueless. I think you really need to understand how IVF would assist miscarriage caused by endo once you have managed to get pregnant. Makes absolutely no sense on the surface of it but maybe there is some rationale?

Chalk me up as someone else who doesn't understand what IVF would bring to the table, here.

Hi all, thanks for taking the time to answer. So Ive been sent from hospital to hospital due to excess waiting times in my borough. Naturally my notes didn’t get sent through. The MRI I had to rule out cancerous tumours on my ovary which initially the medics thought the rumours were found the endo. One theory that was suggested re: the miscarriage is that I had a very early ectopic, due to tissue in my Fallopian tubes they never saw my baby in my womb but my hcg levels rose then fell , I was bleeding and in so much left sided pain. I had an mri but the quality wasn’t brilliant -( but found large Endo cysts on each ovary which he thought may affect egg quality.) So I think the next plan is to go in with a camera. But Until June I won’t know what the M.D.T. Want to do. I do ask questions, I’m a nurse myself so I do understand how the system works but it’s not my specialty and I come away with more questions than answers at the moment though.
I’m aware I got pregnant relatively quickly but I also lost the baby and ended up in hospital so am naturally cautious. I’m just hoping and praying it’s not as serious as has been suggested by the Endo Dr. 🤞 🤞🤞 sorry if this sounds like I’m complaining, I have lots of good things in my life but this has come out of the blue and I’m processing it. I don’t have any friends in this situation so it’s hard to talk through with anyone. Thanks again. Xx

How did they diagnose an ectopic? Ectopic pregnancies don’t go away, they tend to keep growing until your fallopian tube / whatever else is attached to it bursts. So did they treat it? If not why not?

Are they sure the cysts are endo and not pcos? I was told the only way to check for endo on the ovary is to go in surgically. Have they explained the risks of what can go wrong in this type of surgery? I have endo symptoms but both my NHS gaenolocologist and IVF consultant refused to even consider testing for it due to the impact of the tests on fertility (even on my ovaries). They said if it’s not serious enough to be treated then risk to fertility is too great to even be testing for it.

I am really wary about the explanation you were given. Are you in the UK? If so please ask for a second opinion.

Hi Teddy. In regards to the miscarriage I don't know if I’ll ever know the cause for certain I’ve just been given the opinions of the ObGyn and Endo team (seen several months apart). I wish I did, as I’m scared of having another one- I was off work for a month and still in counselling.
The cysts are definitely Endo- very prominent endometriomas on both ovaries. One is 9cm long and showed up as endometriomas on the mri. My ovaries are stuck together and tucked behind my womb. I get issues with going to the toilet, sorry too much information - on my period which suggests (I know this is all just opinions until they see it with a camera) that my ovaries are stuck to my bowel.
Yup I’m in the U.K. going back in June after my case has been discussed at M.D.T. And I’m really hoping there will be a clearer plan at that point.
The Endo team said that any surgery would be in order to preserve fertility, which seems to be going against what your team said. God it’s so confusing.

Hi I have endo on my ovaries too. One is 6cm so I'm not sure what level that is but I have had them for years. I got pregnant with my dd with it there and it was there all the way through my pregnancy. I was trying for many years but I still got pregnant. I've been trying for a second for about five years and after lots of tests and scans I will be having laparoscopy and dye soon to treat it. I just wanted you to know there is hope.

Hi OP. Sorry to hear about your miscarriage and the endo diagnosis. I took have been diagnosed with endo. The doctors thought they saw an endometrioma on ultrasounds and so I had a laparoscopy-in this they removed the endometrioma and other adhesions on both sides of the pelvic wall.they did leave some adhesions on the Bowel as apparently it won’t affect my fertility and is more complex surgery with longer recovery etc. So what I’m trying to say is that endo can be treated with a laparoscopy so that’s a good thing. I’m sure you will be offered this and then hopefully you will have more answers and have the endo sorted out. I have friends with endo who have conceived relatively easily so it doesn’t have to stop people. But of course it is a condition related to infertility and I am now on my first round of IVf. The positive thing is that I think IVF can be effective for people with endo to conceive. Good luck and try not to worry too much. I hope you get your answers.

Mouse! Thank you so much for taking the time to reply. I’m aware it early days and I won’t know for sure until they go in with a lap. I’m glad you’ve been able to have treatment and I hope and pray I.v.F. Works for you (and me too). I know it’s not impossible but I’ve been a bit floored by the stats (never read the stats I hear you say 🤦‍♀️), so it’s good to hear from someone who’s had it. It’s pretty silent with me, just painful but normal periods. The pain in my right side during pregnancy was grim though so I’m wary of T.T.C. Again without more of an idea of what’s in there and trying to improve our chances as the thought of a miscarriage again is daunting. Anyway, let’s hope we both get a good outcome. 🤗

That's tough news to receive.

I would recommend looking at the Endometriosis UK web site and the Endometriosis UK forum on HealthUnlocked as well. There are some very knowledgeable endo people on there (as well as some who have just received a diagnosis and are new to it all). And there are people there who have stage 4 and have had successful pregnancies.

If you're of an academic nature, there are published articles looking into the question of whether it's better to have surgery for stage 3-4 to restore the anatomy and excise endo / adhesions, or not to because of the damage to the egg reserve. Honestly it's probably better not to look at the stats as you say, so forget I said that! There isn't always a cut and dry answer and I agonised about how much surgery to have. I had to go the surgical route because, just as in your case, a large endometrioma is not a great thing to leave on an ovary.

Also it sounds like endo is affecting your quality of life, so that is worth bearing that reason in mind when considering surgery. Your pain and bowels matter, OP!

Endo specialists tend to say go straight to IVF because of the evidence base around women with severe endo and infertility, who the current research suggests generally do a bit better with IVF than TTC naturally. But that may not help the OP on an individual level because every case is different, really!

Anyway, it sounds very positive that you've got a MDT looking after your treatment and not just one specialty.

That’s very helpful and informative, thank you so much for taking the time to reply and I’ll look into your suggestions xxxxxxxx.

Hi Parrots83, hope you are doing well. I wanted to share my story to give a little hope.

I was diagnosed with Stage 3 endo when 20. I have numerous laps over the years to ease pain ect. I wasn't until I was married in 2015 that we decided we wanted to start a family. I knew it would be difficult due to the endo so I have a lap in Oct 2015. All went well and in Dec 2015 we found kind we were pregnant (10weeks post op). All went well and we have a beautiful healthy daughter who is now 2.5.
Last year we decided to try for number 2 and fell pregnant in May 2018. Around 7weeks I started to bleed. After 5days being in hospital they confirmed we lost the pregnancy. I needed emergency surgery as was in so much pain. When in surgery they found my endo had came back and this time was Stage 4. They couldn't do anything for it there and then as I would have bled to much due to the pregnancy hormones. I was told to try again naturally when ready. We tried with no luck so March this year we decided to go private and have another lap. At this point I was unable to work, have sex. Socialise due to the pain. The lap was successful and he removed as much of the endo as possible and my surgeon said I stand a good chance a falling pregnant naturally again. So this month we are ttc again.

Honestly don't give up hope. It's was so wrong for the Dr to say about IVF even before doing a lap on you. There is so much that can be done. Thinking of you and here if you need a chat. P.s I'm a nurse too