So after years of pelic pain and bad periods, 'IBS' and an pregnancy loss at 25wks(15yrs ago)I finally had my diagonistic lap Jan 2023 and extensive endo found in my pouch of doulgas. I saw a very good endo speacialist who said he managed to remove it all and thankfully there was none on uterus/ovaries fallopian tubes.
He said I could ttc when I was ready.
Which took a lot of courage following my previous loss. I couldnt belive how amazing I felt after the lap it was litrally like I was completely cured, went from pain all day everyday to nothing and my periods were so much better.
I feel pregnant easily in May and had strong prgencnys symptoms a scan at 6wks showed a little dot with a strong heartbeat.
11w 6day however started to bleed and a scan showes our little baby has stopped developing at 7wks and no heartbeat. Competly devastated. I went home and things ended up complicated I haemorrhageed really bad and was rushed right back to theatre. It was tje scaryest day of my life.
Now 4wks on and the pelivc pain I had is so intense again exactly the same as before the endo was removed 😫😔 it feels like its all right back! I dont know.if this is normal or what and am worried that amount of bleeding has caused it to all come back.
Im also worried there is a kink netween the endo and my baby loss. (I have seen some studies to show there cpuld be but then it says not enough evidence so)
I see my endo speacalist in Sept.so I habe a lot of questions.
I suppose am asking if anyone else with endo has had any problems with pregnancys? ( i know it can effect getti g pregnant)
Thanks xxxx
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Crazycatladyjones
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I’m so sorry for what you’ve been going through and for your recent loss.
I have deep infiltrating endometriosis but not on my ovaries or fallopian tubes but on my bowel. I’ve had two recent miscarriages, between 4 and 6 weeks. Both after excision surgery under a specialist last November. I was concerned that endo symptoms had returned but was told that it was my bodies reaction to the miscarriages, hormonal changes etc I’m now on an anti inflammatory diet, having Accupuncture and ended up seeing my GP for further tests regarding fertility
I hope you look after yourself and have good support around you. Best wishes x
Sorry to ask but do you or have ever passed any blood and clots from your bowel with excruciating pain, as I have never heard of endometriosis on the bowel
I have it on my uterosacral ligament as well and was initially told I had mild endometriosis but yes I suffer with rectal bleeding, constantly feel like I need to open my bowels (this I find the most debilitating) and have also been hospitalised with an impacted bowel. I get cyclical pain which affects my pelvis quite significantly. I went private after I had a diagnostic laparoscopy on the NHS and had an MRI scan without contrast last November and was told I had extensive spread including the pouch of Douglas. After the excision surgery things improved but i still have symptoms. You can find out more about it on endometriosis uk website. I looked up referral criteria through NICE guidelines on endometriosis and found an accredited endometriosis surgeon myself. I feel like you have to do alot of research yourself with this condition. Take care of yourself
Ty so much for your reply, I have j termite T bleeding for years which they kept saying it was my Ibs, until I had a excruciating pain filled immediately a lot of blood over 2/3 days, had colonoscopy bug that was clear, trying to say it might of been piles now but there’s no way pikes could of been The cause plus found none during my scope. So been doing my own research as I was found to have endo in my late 30’s and offered ablation which I said. I too as it was nee out then, was pushed soon after into early menopause so no more mentioned, but with bleeding bowel end they have come up with no answers fit test was also positive, and I did t no you can have bowel endo even after menopause, I too get pain in my rectum like a heavy pain bloating pelvic pain,
I had a normal colonoscopy in the January and in the November they found the bowel endo on the mri scan and during surgery. I couldn’t comment on the menopause side of things as I’m 35 and exploring fertility at present after 3 miscarriages. I was against having zoladex after my first operation (no judgement just not what I personally wanted) I think seeing a specialist even though it was expensive was very helpful and validated alot of things that had been dismissed as IBS/piles. It’s exhausting but it’s your life and you only have one. I don’t have much faith in primary care now after being told I had generalised anxiety and IBS for three years
My sounds very similar to me, ibs piles, anxiety, just east things to blame it on to get it answered and then left at that on their part so MRI seems the only way for me to try find someone who will help me, I too have no faith in the experts as we tend to have to look for answers ourselves which we shouldn’t have to this day & age, and someone who has more expertise yet they all should know the same things.
I’m so very sorry about your miscarriages, 1 is bad enough for having to go through it again & again is just awful heartbreaking, my daughter had the 4 miscarriages and after her 2nd daughter who are both beautiful, decided she had had enough and couldn’t go through it all again. So she stopped. You are only young so try not put too much pressure on yourself, Sometime worry and anxiety can have an effect on fertility so try not to worry, easier said than done I no, I hope you get sorted and the help you need lovely x
I too get pain in my rectum but don’t have periods due to menopause but still get symptoms lije I was having a cycle each month. I had 4 children and suffered since starting my period at 11 so try not to worry too much, my daughter though had 4 miscarriages and found out she was dangerously hyperactive thyroid so worth checking out thyroid levels when you get pregnant but make sure thyroid antibodies are checked too as really important in pregnancy if any problems due to this
Thanks for reply and so sorry to hesr of your losses too.Its the worste feeling!
I really think there must be a link a lot of reading I have done on miscarrage groups etc endo is mentioned a lot. I know Tommys are doing some research into now. Its also a joke you need 3 reurrent miscarrages before they will do any investigations I habe been refered to my local recurrent miscarrage team but we dont know if we will be accepted. Im also trying to be as healthy as possible.and trying some.more holistic threapys.
Firstly I am so sorry for your loss, no one who hasn’t been through loosing a child can fully understand the pain. I have lost 5 and had a ruptured ectopic pregnancy which nearly cost me my life. Thanks to an on the ball Dr in a+e I was in hospital and in theatre in 20 minutes. I’ve had many surgeries and been on zoladex 4 times and I’m currently on prostap. I have a full hysterectomy due to be done in October. The Endo can be a cause of fertility problems, either with conception or pregnancy itself. Sadly it gets brushed off as one of those things, or nature knew best etc. Not helpful to hear when it’s happening to you. Your body has just been through a massive trauma. Your hormones will take time to sort themselves out back to normal. Be gentle with yourself. Speak to your gp to check there are no post op infections. Sadly this is something that can come along just to give us something else to deal with almost as an extra blow. Your not alone, take care of yourself, best wishes
Thanks for your reply and I am sorry to hesr of your awful losses and experience. Women really have it hard and there is definitely a longggg way to go yet in womens health being a better service. I really feel like there is a link and it needs to be taken into account during pregmancy x hope all goes ok with your op and take care xxxx
Thank you. Yes I’ve had some horrible treatment over the years in the hospital. Including when I lost my first baby a horrible hard nosed RAF doctor marching in saying nothing, then without even looking at me saying “ so your baby’s dead, did you want it?” And it was a woman which made it worse! I complained and was told they were a fantastic doctor and they backed her all the way, I didn’t even get an apology. Sadly my journey to be a mother was not meant to be, but that thankfully isn’t the same for every woman in our situation. I concentrate on being the best Aunty I can be, I must be doing something right as I’m always getting phone calls for advice or just to check in nearly every day. Best of luck with your care.
Thats so discustricing trwamtner. Im lucky the staff were so warm and kind to us and then they saved my life in what all turned into a it emergency situation.At the moment I am just trying to take each day as it comes, I am waiting for threapy and to see if tjere is further testing I can do to see if there could be any reason this has happened. I have a wonderful family and so many nieces and nephews they do light up your life x
That’s is absolutely appalling of the doctor saying that to you, I think that dr needed a lesson in compassion and repore, not right getting supported by colleagues and not giving you the support you needed at the time. You must be a very special auntie which is a god thing to be so cherish that lovely x
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