Missed miscarriage and endo

[Meriel_Owen]

Hi warriors,

Just wanted to share my story, because I feel so low and heartbroken, and I'm sure there are women here who can relate to my experience.

The loss that comes with a miscarriage is hard enough, but then when I also have endo, it's that sinking feeling that my womb is just broken and it's just so hard. None of the things anyone says can really help "you can try again" "it's very common" - especially when it comes from friends who have healthy wombs and healthy babies. It's not their fault, it's all well meaning enough, but I just feel like no-one really understands. All that I've been through already with the endo. To even get pregnant felt like a miracle, but then it was snatched away :(.

So, my story...

I am just coming out the other side, physically (def not mentally!), of a horrendous experience with my miscarriage. It was my first pregnancy after taking the coil out, with no signs of anything wrong, then the routine 12 week scan showed no heartbeat, a tiny fetal pole, and a large, irregular shaped sac. The nurse told me, in her experience, it looked like a failed pregnancy - a missed miscarriage, where your pregnancy hormones carry on despite the fetus not growing - but they wanted to wait a week because of rules (I can't say those rules helped me at all) before they could offer me any treatment.

At the end of that emotionally painful week and another scan to confirm, I opted for medical management and took the pills orally.

I asked the doctor if my endo could make the pain/bleeding any more severe than usual - she didn't know, went to go and find out, and came back with the answer that "because endo is casued by tissue outside the womb there is no reason to believe it will make your bleeding/pain of miscarriage any worse". HA!

Within ten mins my cramps started. They got so bad that none of the pain killers they gave me worked. I threw up twice from the pain. I thought I was going to pass out and they eventually gave me gas and air which took the edge off. One of the (brilliant) nurses told me that my endo could be a contributing factor to my problems, including the miscarriage - so was the doctor wrong?

I was admitted to hospital that night and had the heaviest bleeding of my life, including clots the size of lemons. I had to be wheeled to the toilet where I squatted on the floor and out came the blood into a toilet pan.

The doctor that saw me the next morning in hospital told me that they'd examined the remnants, but I hadn't passed the tissue yet, and there would be more clots and pain to come.

I got home two days later, and still had the cramps and bleeding - a cocktail of drugs and I was just about able to manage it at home. It took me a further 8-10 days to pass the tissue, had to have another scan to show that it was still not all out, and I'm still on their list for a follow-up scan.

Now I am grieving, and feeling extremely tired.

I will have to think about managing my endo again, which is so hard to consider. I should be 15 weeks pregnant. But I'm not. I'm empty.

And in hindsight, I wonder if taking the medication was totally the wrong choice for me, alongside the endo and the contradictory statements from docs and nurses. Anyone else had this experience?

And as for healing from miscarriage, and dealing again with managing the endo, always nice to hear from anyone.

TIA for reading/responding xx

[Shay30]

sending u the biggest hug 🫂it’s the must heartbreaking moment you need to grieve and give yourself time to process what you have been threw 🥲I have endo and was on clomid a fertility drug when I came off it I fell pregnant on my own at 12 weeks I started to bleed then was told it was unrine infection but It was a miscarriage then hospital thought I was much further on my endo has been extremely bad for many years heavy bleeds cramps sore legs ibs inflammation migraines sick ….. fertility issues at the time I lost the baby my sister my best friend and sister n law all were due babies a week apart I was devastated……. But I did go on to have 2 children and I promise you you will get stronger ❤️be kind to yourself your body’s been threw a lot take one day at a time im so sorry this happened but u will get threw it ❤️💜❤️💜

[Pinky_37]

I’m so terribly sorry for your loss. i suffered a miscarriage some 15 years ago. I was devastated. However… it showed that everything worked. That pregnancy just wasn’t meant to happen. It’s very difficult to know whether Endo makes it worse or not. What I do know is that many women suffer the same loss and they don’t have Endo. I think for you, you need to get through this stage but look at it as almost a positive that it allows you to know that everything can work. Following 2 surgeries for Stage IV Endo (I’m riddled! Or should I say I was… I had my last surgery on 25th Jan this year). Alas, I have 2 beautiful children who I thought I would never have. We were fighting it from all angles as my husband is 20 years older than me and had had a vasectomy some 15 years earlier. He had a reversal and only has 33% good sperm. Started IVF but fell pregnant naturally and had the miscarriage. Then started Clomid and fell pregnant month 3 with my daughter and then 22 months later on my month 3 with my son. Currently, you’re grieving but it can happen.

You can and will get through this. Stay positive.

[HarrietC]

Hi Mariel,Firstly I am so so sorry you're having to go through this, it's a real struggle I completely understand.

I have only opted to have a natural miscarriage twice I think I took the pills once....you're right it's incredibly painful, never thought a woman could bleed that much and drawn out process. After this, when I had missed miscarriage they would give me a D&C, I think they saw it as more humane as it's so painful with endo and when you've had multiple it's a harrowing process. Doctor's have given me some ridiculous advice before, I have become a bit of an expert over the years and have found myself questioning gynecologist. Everyone has a conflicting opinion in my experience, what I could do differently, supplements, acupuncture, endo massage, you name it they've advised it.

Unfortunately I've been pregnant about nine times now, all ending either very early on around four weeks, I did manage to get to 13weeks once naturally, I then had an ectopic pregnancy a week before my wedding, ending in surgery where I thought they were removing my tube, found out six months later they'd removed my ovary with it (fuming) and then got to 9weeks on my second round of IVF.

Unfortunately my endometriosis had caused my womb to be a pretty uninhabitable place, then only ovulating from one ovary, when I had the IVF I even paid privately to have an endometrial scrapping as it's meant to help the embryo attach to the inside of the womb wall but to no avail. So I reached the point where I excepted that this wasn't a fair process for myself or my husband anymore after three round of IVF.

I was on here daily through the process getting wonderful encouraging messages from others with their success which made me want to fight on. However all the fertility treatment I've had has literally fed my endometriosis so it all ended in a big surgery at a hospital in London specialist in endometriosis, I have a sliver of an ovary left which is the only thing stopping the menopause kicking in at 35.

We'd been through the ringer and having a huge family himself we've spent years awkwardly congratulating them one by one having their babies. It took months of recovery, for my body and my soul. Thankfully I have an amazing husband and wonderful mother too at the time, so I just immersed myself in their love. I then eventually excepted that maybe I would never be able to carry a child, my husband's and I future plans changed, we made different dreams and moved on with the support of the wider family.

It's not all doom and gloom we have three embryos left from our IVF and maybe one day we can afford a private round of surrogacy.

I always write my story out and I NEVER ever send it, no one ever wants to be negative here. However all those positive messages I got did help me in the moment to get through but long term it made me think I was a freak, with my non functioning womb. The specialists have said I have the worst endometriosis in the South East of England so my story, I hope is nothing like yours, I pray that your future is full of wonderful babies carried naturally with no issues.

Please be kind to yourself first, take stock of your mental health, take time not to rush into any form of treatment, if they offer counseling take it because in hind sight for me, you'll need it.

You are a temple, remember that first and always.

Sending hugs,

Harriet

[Jess1981]

I'm so sorry for your loss. We had a 7 year struggle to have our daughter-due to a delayed diagnosis of my endometriosis which affected my fertility until it was treated by an endo specialist ( 3 laps I had in total ) a chemical pregnancy after my first lap which in my case made my endo re grew ( it was not all excised until I had my 3rd lap ad it was on my bowel as well no gynaecologist before my endo specialist would touch it)

After a late loss of 20 weeks ( like your loss we had no sign our baby had died) another chemical pregnancy and a loss of 6/7 weeks we had our youngest daughter Eliza who turned 1 last month.

The journey to have our daughters was brutal but I am so glad we stuck at it and didn't give up.

Pregnancy loss in early weeks is horribly common 1-4 😢 until we tried for a baby we didn't realise how many pregnancies end up in losses. Sadly not every pregnancy is a baby 🥲

But just because this pregnancy didn't work out doesn't mean another pregnancy won't be viable. Most ladies experience a miscarriage but will go onto have a healthy baby and I say this with kindness and as someone who has had 1 late loss and 3 earlier losses. You are also more fertile after miscarriages and have increased fertility for 6 months post miscarriage in my case it did help us fall again and again until we had our youngest baby ( we are even considering trying for another baby !) speak to your specialist to ask when is okay to try again. Some ladies feel ready to go again asap some need more time to grieve the loss. There is no right or wrong here whatever feels better for you.

I wish you the best with it all and hope the next pregnancy is your baby Xx

[EKP31]

hi I’m so so so sorry for your loss. What you went through sounds utterly horrific and of course it will take a long time to heal both physically and mentally so please be kind to yourself ❤️

I have stage 4 endo and PCOS and had to have IVF to conceive as tried for years on clomid and metformin naturally. I got pregnant on my second round of IVF and had a missed miscarriage at 9 weeks. I opted to have a D&C which was the right decision for me.

I write this as I sit here with two beautiful healthy children only a few years later. My fourth and fifth rounds of IVF have given me my babies so I just want to you to have hope that you will eventually get there. The journey may be long and painful and not what you thought but there is hope.

Be kind to yourself and sending you a great big hug x

[Mcyizml2]

sorry for your loss. I lost one at 12 weeks with a missed miscarriage too and it’s heartbreaking. All I can say is it does get better with time. Make sure you rest - I took two weeks off work and definitely needed it. With regards to your questions I think at 12 weeks there is a lot of tissue to pass and it can be as you described - horrendous. I had a friend that went through it. Im not sure they warn people enough. There’s an option where they put you under general and remove it and im so glad I went for that as it was straightforward. Sending you hugs x

[Mrs_Potts]

Hi Meriel,

I’m so sorry to hear you have been going through this. I too have been having a similar experience, but I promise, you will feel better - it just feels like the grief and empty feelings coupled with the pain and bleeding are endless and too much to deal with. Please make sure you give yourself enough time to heal and recover, it is so much to process emotionally and your body has been through such an ordeal.

Your story is so sad to read as confusing and contradictory advice seems to be given too often because of endo, but if your instinct at the time told you that the route you took was the right thing for you then be assured that it absolutely was right considering the information you were given. I know how hard it is not to allow too many of the ‘what ifs’ to cloud your thoughts…

I was hospitalised a couple of weeks ago with horrendous cramps, bleeding, a fever and elevated heart rate. It seems naive now, but I so desperately wanted to hang onto the fact that for the first time I was finally pregnant, I convinced myself this could simply be break through bleeding from my endo. No one seemed able to tell me if bleeding in early pregnancy with endo is normal. A gynaecologist examined me and told me things looked ok and there was hope, but just a few hours later I was woken and told my symptoms were likely being caused by uterine sepsis (!) deeming the pregnancy unviable. I didn’t sleep for the rest of the night as I knew I would have to break the news to my husband who would be heartbroken in the morning.

The rollercoaster continued the next day as it turned out the sepsis symptoms were actually COVID, so yet another gynaecologist came to see me and said that this might not be the end. I was sent for a scan where I was told that not much could be seen other than a white blob, but I was again given more hope as the beta hcg had increased, albeit not quite doubling. After three scans a few days apart, still barely anything could be seen and I was still bleeding so I was offered the medicated route out ‘just in case’ it was ectopic or abnormal. After nearly a decade of trying naturally and raiding every penny of our savings to afford just one round of IVF which to our amazement had been successful, this choice seemed unthinkable, especially as there seemed to still be a small slither of hope.

No one seemed to understand how rare and precious this pregnancy felt to me as like you, I have friends and family who have had healthy babies fairly easily and don’t understand that my condition is so much more than just heavy periods. It also felt like the nurses completely missed the point that my world was falling apart when I was flippantly told ‘oh you can try again’. A final scan was reluctantly granted, but I was advised rather abruptly that the rationale in offering the drugs was so my body would expel the pregnancy tissue because my endo riddled uterus ‘doesn’t look good enough’ to support it. This statement was absolute agony after the multiple treatments and surgeries I’ve been through to manage my endo.

In the end, against the advice, I opted to wait to see what happened, but after a week of emotional turmoil the hcg has dropped indicating a miscarriage. In some ways I now wish I’d taken the medicated route as even with out it, like you, I’ve been bleeding crazy amounts and haven’t found a single reliable source of information about what to expect when you lose a pregnancy with endo. It’s all so confusing, but a nurse did suggest that the miscarriage will clear some of the endo out meaning fertility will increase directly afterwards, so maybe that could be a small silver lining and explain the massive clots?

It’s no wonder you’re feeling tired after everything you’ve been through - I really hope you can have the time you need to come to terms with everything as it has such a huge emotional toll. I understand the empty and broken feeling you speak of, but your story shows so much courage. Thank you for sharing and hang on in there.

Xxx

[Pennyheart1]

I’m so so sorry for your loss and all that you have been through. There are just no words that convey it are there when you loose your baby. I too had a missed miscarriage at 12 weeks, and I was devastated and felt like I was broken. I know that feeling.

I also remember just knowing and not needing to count how pregnant I should have been as time rolled. And watching other women be pregnant when I should have been.

I don’t think there are any wrong decisions on how to miscarry in this situation. To be honest all options are horrible. You just make the best decision you can with the info and advice you’re given. I’m so sorry you suffered so much.

Be really gentle and kind to yourself. It is a really hard time. Just sending a big virtual hug to you. ❤️

[Meriel_Owen]

Follow-up questions!

So, here I am STILL BLEEDING and cramping. As expected this could be my period somewhere in the mix too. But it is SO draining. It is my 33rd day of continuous bleeding.

I am also just so exhausted as I've also somehow picked up covid despite hardly going anywhere. My plans for going back to work just got de-railed yet again.

I've had to go back to the dreaded Early pregnancy unit so many times, and re-traumatise myself, so I really don't want to go back if I don't need to. Anyone got any thoughts on how normal this is, or if I should speak to a doc??

TIA xx