Have any of you ladies been lucky enough to fall pregnant with severe endometriosis? I was told earlier this year I'll likely need IVF but was delighted to fall pregnant in March but sadly at 11 wks discovered it was a missed miscarriage. I'm not entirely sure of what this all means now. Whether I was extremely lucky to get pregnant or if this is an indicator I may fall pregnant again. Ihave large bbilateral endometrioma. I've seen a consultant and they want to give it until October and then move forwards with surgery. Desperately want to fall pregnant again but no idea if it will happen or if the endometrioma are not great to have during pregnancy x
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I was told in January that I had stage four and that I would be highly unlikely to get pregnant. 3 weeks later I found out I was 2 weeks pregnant! I am now 22 weeks and so far everything looks good. I spend most of the time terrified that something will go wrong but hopefully my luck will continue.
I just wanted you to know that doctors don't know everything, the fact you got pregnant once means that you can and that is the most important thing.
Also since becoming pregnant I have had no pain or problems, although I have my uterus attached to my bowel.
Good luck to you and hope you get good news soon! Xx
That is great news and very reassuring. My uterus is also attached to my bowel, good to know it doesn't cause problems in later pregnancy. Good luck with the rest of the pregnancy, I'm sure you'll keep worrying but it sounds like all is going fine
Hi I'm very sorry to hear about your loss. I'm 21 weeks pregnant and have a history of endometrioma and severe endo in addition to adenomyosis. I had three early miscarriages. The medical profession found it hard to explain why to me. I was told endometriosis makes it hard to get pregnant in the first place but it is not linked with miscarriage. I must say that I don't believe this to be true and I met with one professor who agreed there could be a couple of reasons for miscarriage with endo.
1) implantation failure. Endometriosis makes the womb a very toxic environment with fluid that is trying to fight disease and repair damage (our immune response) which can make it very hard for a little one to settle
2) blood disorders
Endo is a bleeding disorder. Some women who have endo also find they have problems such as sticky blood disorder. This can impair blood flow to the placenta
3) hormone imbalance
Your hormones might look ok on a general GP blood test but believe me us ladies with endo do not have stable hormones! I believe my progesterone supply was often disrupted and endo causes estrogen dominance.
4) of course 1 in 4 women will have a miscarriage without having any medical issues
How I got and stated pregnant:
I had extensive surgery to remove endometriosis.
I had a endometrial lining biopsy to rule out natural killer cells in my womb. This test is also thought to help with implantation and resets the lining of the womb
Although my progesterone was fine on a blood test I was started on it anyway which improved the length of the second half of my cycle
Once pregnant I was started on clexane to keep my blood flow to the placenta
I think it is encouraging you got pregnant as some people never can. I think you will find you get pregnant more easily after having endo removed surgically. If you experienced further miscarriage (and I really hope you don't) you need to push for recurrent miscarriage clinic as this is where all my investigations and treatments were done. Usually you have to have had 2 or more miscarriages for this.
I was thinking of trying IVF after 2.5 years of unsuccessful pregnancy but in the end it happened naturally. If I'm honest I think IVF drugs can worsen endometriosis and I'm not sure if it would of helped with all those problems that could have been causing miscarriage.
Can I ask how you were lucky enough to know about an endometrial lining biopsy? procedures to aid pregnancy and would they be available privately only?
I went to university hospital coventry and warwickshire to the recurrent miscarriage clinic. The doctor there did all the nhs tests but on top of this she was a professor who engaged in private research. She offered me the test which did cost me £250 but I believe was worth every penny. As they are still gathering research into its efficacy it is not routinely offered to nhs patients. I was just in the right clinic at the right time!
Thanks for all this information! I replied earlier but just seen it didn't post. It's very interesting to hear about your tests.
Did you need to have both natural killer cells and progesterone managed? was the pprogesterone given as a precaution?
I did get a progesterone test done to check I was ovulating and although it confirmed I was It was 21 pmol and I felt it was low. I don't think I could get testsdone aafter just one miscarriage so hoping will fall pregnant again and have a happier ending. As I had a missed miscarriage I was half thinking my progesterone levels might be ok.
Thanks for the info. Best of luck with the pregnancy!
Your welcome I hope it helps if things continue to be difficult. Do you know how many weeks the baby measured? My consultant said progesterone problems usually cause very early miscarriage. Implantation failure can affect a pregnancy up to 12 weeks or until the placenta is fully formed. Blood flow issues could impact a pregnancy at any gestation. I luckily did not have nk cells so I was treated with progesterone and blood thinning injections as a precaution for those issues. I also believe that the biopsy refreshed my womb lining and made it more receptive. But who knows! It could have just been our time I hope you get your time very soon! X
I hadn't realised implantation failure could be up to 12 weeks! I thought that was literally the first few days. Baby measured 6.5/7wks I believe and discovered around 10.5 weeks. We saw a heartbeat at 6w2 and they said all looked fine then.
I may just bite the bullet and try baby aspirin and natural progesterone cream if pregnant again. . I don't think either could be that harmful as they prescribe as precautions to women it would seem. Xx
I'd be cautious with the aspirin: I have copied all the information from my clinic letter for you to read....
On basis of the clinical presentation and endometrial assessment, we suggest the following treatment plan:
1. Mid-luteal endometrial biopsy (‘endometrial scratch’) to enhance the uterine decidual response – this was performed on the day of uNK cell testing.
2. Progesterone supplements (Cyclogest 200 mg twice daily) from day 22 of cycle (day 1 = 1st day of period). After 7 days, carry out a pregnancy test:
• if positive, continue with the progesterone supplements until 12 completed weeks of pregnancy.
• If negative, stop the progesterone supplements and await onset of period. Repeat this treatment regime for 3 consecutive cycles and reassess if not pregnant within this timeframe.
3. Our uNK cell test indicates that prednisolone is not indicated.
4. Low-molecular weight heparin (e.g. Clexane 20 mg sc daily) from as soon as a future pregnancy is confirmed to be intrauterine by early scan until 12 completed weeks of pregnancy. The rationale for using low-molecular weight heparin is that it is cytoprotective of placental cells independently of its anticoagulant actions.
5. We advise against taking aspirin in the early stages of pregnancy as it may interfere with the preparation of the lining of the womb for pregnancy.
6. We recommend early pregnancy scans from 6 weeks onwards for check on fetal development and viability
I suffer from multiple miscarriages and your journey sounds very similar to mine. I was wondering if you could recommend your gynaecologist or surgeon who did the biopsy and removed the endometriosis prior to pregnancy? I was dismissed at the miscarriage clinic as they did not find anything now my GP suspects endometriosis and I am looking for a specialist that is aware of the link between recurrent miscarriage/infertility and silent endometriosis that practices in the UK.
I'm very sorry to hear about your loss. I first got pregnant 13 yrs ago but miscarried. It then took me 4 years this was before I discovered I had endometriosis. I tried clomid (fertility drug) but no success then after a lap it was no wonder I didn't get pregnant as my ovaries were stuck down and I had severe endo and cysts on both ovaries. You have a 6 month window after a lap I was about to start IVF and fell pregnant naturally. If you struggle then go see a specialist you have half the battle won as you know what you are up against. But don't ever give up!! I have a beautiful 9 year old girl and wonderful 7 yr old boy and I count my blessings every day. If you are looking for support I use to moderate on fertilityfriends.co.uk you will find heaps of support on there including ladies ttc with endometriosis or who have miscarried. Good luck you will get there! Xx
I've had endo for over 15 years now. First lap when i was 22. I was married at 26 and within 12 months fell pregnant. At 11 weeks i found out i had a missed miscarriage and went on to have a D&C. Following that 6 months after i has a lap and a "clean up" so to speak. A few months later fell pregnant again only to miscarry at 8 weeks. this continued for another 2 years so in total 4 miscarriages. I then went to see a specialist at St Mary's in their recurrent miscarriage clinic. He explained i had a blood impairment after they checked for clotting impairments sometimes associated with endo and miscarriages. They are unsure why mild endo causes more infertility issues than later stages however by the time i saw him i was stage 3 endo. Has a clean up again and tried yet again. I fell pregnant and was put on Heparin injections until 36 weeks gestation. Also progesterone suppositories until 14 weeks.
at the age of 30 i then had a baby girl, (now 7) and a few years back had another. The second was a bit of a surprise, fell pregnant quickly so got on the injections and progesterone straight away. I had a large Endometrioma throughout which became smaller and then grew back,; I had it out after he was born.
The op will help clear things up and give you the best chance to fall pregnant... if you can, then get your Dr's to check your fibrinolytic response. Simple blood test but a costly one. Worth asking as sadly they don't usually check these things unless you've miscarried a few times.
Don't give up hope, I had my first child at 18 and I could not get caught for 8 years and then I had miscarriage at 12 weeks then when my daughter was 19 she fell pregnant so 11 years I had not conceived for I had given up by then and out of the blue when my eldest was 3 month gone I found out I was pregnant my pregnacy was high risk so was never away from the hospital. I was so anxious as you will understand.I was 37 at this point so I slept for most of it my baby's valves would stop working so I was admitted a lot and had two scans a week I knew that I had all the markers for my child being born with down sydrome my age, how small she was, she did not move much all the time I thought today's going to be the day but we made it we got till 38 weeks and after a e c section my little girl was born. Lily was born with down sydrome but It was neither a shock or a disappointment. I had a beautiful baby girl that lights my world up each and every day. I did have the test at 12 weeks but she hid for nearly an hour the lady tryed to measure her neck.i remember going into the toilet and talking to her and saying you don't want them to know do you. But I knew, I talked to my partner all the way through and studied all I could about down sydrome. I was prepared any way what I'm trying to say is there is hope after losing a baby 19 years I waited to conceive I had pcos endo and fibroid. I just excepted I could never have another child but she's here , big hugs x
Hi there, I have endometriosis but not sure if it was severe or not. I was told however that one of my fallopian tubes was blocked. As I get ovulating pains when I tried to get pregnant I specifically tried when I was ovulating on the right side. I got pregnant straight away but also had a missed miscarriage at 12 weeks. I then tried again 3 months later again got pregnant straight away and now have a beautiful daughter who is 18 months old. So did you get pregnant without the IVF? If so whats the harm in trying again. Perhaps just speak to your consultant again to see if the endometrioma will be a problem during pregnancy or not. My consultant told me that although my fallopian tube appeared to be blocked it could have just spasmed during the test and it may not actually be blocked maybe that may be a similar thing for you. If it's ok to get pregnant now though why not try and if it doesn't work you can try IVF. I recommend conception vitamins for you and your partner to help. Worked for me and lots of my friends. Good luck xx
Thank you. Yes I fell pregnant naturally. My left ovary is pretty much hidden by a large endometrioma but my right ovary worked so fingers and toes are crossed it will again. The consultant has given me until October and then if I haven't got pregnant ill have a laparoscopy to remove them. X
Ps. I am very sorry for your loss. Try not to worry. I remember I worried lots too when in your position. Lots of women have miscarriages and you've only had one which one in four women do so it's very common. And you've got pregnant once so yes I think there's a very good chance you could again. You are also more fertile straight after being pregnant. xx
You're right with the worrying wish I could switch off but feeling anxious about the future . I hope the whole more fertile after a miscarriage thing is true so much! !!
I was exactly the same but it sounds like you're in a good position really as you've already got pregnant naturally too. There are lots of other things you can do to help getting pregnant too. I was a bit militant about it because I was so worried. Things like eating well, not drinking too much alcohol or smoking, doing the deed every day lol. Sorry you may be doing these things anyway but I did tell somebody recently all these tips and they got pregnant straight away then after trying for a long time. The eating well etc. goes for your partner too. If you google it theres probably lots more advice too. And try not to stress and worry too as that will help. Perhaps a massage or yoga or something will help. I remember I put a post on here when I first found out about my endo asking for positive pregnancy stories and there were loads even for those who had it severe so I'm sure you'll be fine xx
Yes I have made some adjustments to lifestyle and need to get back to eating very healthy as I have been comfort eating big time since miscarriage. Ive sacked off coffees and dont drink much now, have my vitamins and track my cycle quite religiously now! X
hi,ive had endimetriosis, ive just lost a 11 week pregnancy,ive had 6 misscarriges in 2yrs this is my second one ive lost at 11 weeks. i went to see my specialists on tues and he did a load of tests last time i saw him and one of the test was for lupus, it turn out i had it and thats why im miscarring..if u want chat message me.. x
Hi Cala, sorry to hear about your miscarriages. Finally you have your reason and I hope this is a turning point for you and it can be managed to achieve a successful pregnancy. Good luck! Xx
I'm sorry to hear that you miscarried I also have endometriosis and went on to have a healthy baby boy two years ago I was told by my consultant that if endometriosis is mild it shouldn't stop you from falling pregnant again maybe might keep a closer eye on you if u fall pregnant again I'm trying for my second baby so staying positive but I wish u all the best and hope you have a wee family soon
Thank you, I hope so and good luck to you too. Unfortunately mine is severe so they said I may have some difficulties but they also readily admit they just don't know so I want to fall into the category that defies their odds! Dont you just wish there were several times throughout the month you could conceive!? The waiting drives me mad. But reckon my husband would run to the hills if I was a head case more than one time in the month!
Aww sorry to here that yours is really bad I'm stage 2 which isn't that bad iv had a few addmissions to hospital had laprostopy in January but only four months and back to being in pain but try to get on best I can but I never give up hope as I no that endometriosis is a painful and tiring condition but hope the doctors can do something to help you
I'm being seen at UCLH endometriosis centre. We are holding off on surgery for 6 months to see if I can get pregnant again, then if not I'll have a lap to remove the endometrioma on both ovaries - I don't know yet if they'll remove other endometriosis during that lap. I'll be asking that the endometrioma are excised as I know draining will mean they'll grow back again quickly.
I need much more surgery than this (I have rectovaginal endometriosis and potentially bowel) but I'd like to prioritise conceiving first so hopefully we'll hold off on the second surgery for a while and I will keep ttc, and failing that need to pursue IVF though I'm not sure how realistic that will be on the NHS with the rules of having to try for so many years before getting referred.
I track my cycle on fertilty friend and despite having a very long cycle (33-36 days), my luteal phase looks fine and I ovulate each month around cd 20. My cycle after my miscarriage was a bit crazy but I have read that it often is and hopefully now my body will begin resetting itself.
Hi don't give up hope I am due with my daughter in 2 weeks I fell pregnant first month of trying after my lap. I did have a huge bleed but baby hung in there. Good luck x
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wish I could switch off but feeling anxious about the future . I hope the whole more fertile after a miscarriage thing is true so much! !!
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