Since my periods starting back when I was 12 I always bled from my bottom. I never knew that wasn’t normal as it always happened to me until one day when I was about 17 I actually sat and questioned it and asked Google. Endometriosis was what come up and I was petrified as it has no cure. I have had plenty of tests from laparoscopy to colonoscopy and I still have no answers. It isn’t visible on tests etc but I have been told I so obviously have endometriosis.
In December me and my partner started trying for a baby, I have had 3 miscarriages in 7 months and I am at a loss, I don’t know what to do. Has anyone else been diagnosed with bowel endometriosis and can shed me some light?
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MFB1997
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Your story sounds really sad. It shows how important it is to talk about our issues.
I'm no specialist but it seems to me you have two separate issues going. Have you talked to your go about the miscarriages? They may be happening for many different reasons regardless of your endometriosis.
My fertility clinic has endometriosis specialist and I've been under his care from the start. . It was all organised by my GP so I'll suggest that as a starting point.
Thank you so much. It really is awful, it’s so nice to have this to connect with people who are in similar situations. It can get really lonely sometimes as I’ve never met someone with the same symptoms/problem as me.
I have been in contact with my GP and also the early pregnancy unit and they have referred me to see a fertility specialist to see what’s going on. My GP mentioned that it could be 2 different things going on so hopefully they can shed a bit of light soon as this is so draining.
It's lovely to hear from you. I have rectal bleeding with my periods too. It was one of the first signs of endo and, like you, it took me a while to realise that it wasn't normal until the bleeding became much heavier and I began to have bowel issues too. I'm so sorry you're having to deal with it 😔
Firstly, endometriosis can be present even if it isn't showing up in any tests or scans, laparoscopic surgery is the definitive way to diagnose endo. In my case, all scans were clear until I had surgery and was diagnosed with endo in 8+ places in my body, one being the rectum which explains the rectal bleeding.
I'd really encourage you to find an endometriosis specialist to discuss your symptoms with, especially if it's possible that you may have bowel endo. Under laparoscopy, a specialist might be able to see what a general gynae surgeon cannot. A good place to find an experienced consultant is on the BSGE website where you can search for a BSGE approved centre near to where you live: bsge.org.uk/centre/
I'm really sorry to hear about your fertility struggles too, it's heart-breaking 😢 The Fertility Network offers really supportive information when trying to conceive, which might be helpful to you: fertilitynetworkuk.org/
I really hope you can find some answers to everything soon.
It is so nice to hear from you, thank you for responding to me 💕 I’m so sorry you have to go through this, it is so so horrible, especially when no one seems to be able to give any answers.
It is so strange! Ive had scans, surgery, mri’s etc when I was around 18/19 and now I’m 24 nearly 25 so I’m thinking things may now be visible. Did you have laparoscopic surgery?
I will check those websites out, thank you so much. It’s comforting to know I’m not the only one suffering with this, it can be so lonely.
Thank you MFB1997 I'm sorry you're having to live with this too! It's very draining isn't it? I have found that altering my diet has helped with the bowel symptoms, which could be something worth exploring with a professional nutritionist.Yes, I had laparoscopic surgery aged 27. It's definitely possible that the endo is now visible for you, it takes skilled surgeons to detect it and diagnose it properly.You're not alone at all, many of us have endo on the bowel and live with these symptoms, and we've almost all had a very long journey to diagnosis. Keep persevering until you find answers. You know your body best.If you ever feel you want to chat to someone, Endometriosis UK has a helpline which is run by volunteers who also have endo, and are there to listen. The rota is here: endometriosis-uk.org/helpline
Bless you, I feel for you. Do you have any other symptoms?I had a laparoscopy at 24 and I knew I had it but they didn’t find anything. Fast forward 5 years of pain and I found a super awesome specialist who did another and found severe endo. Got rid of it - I had two babies. Now very much back and having another laparoscopy next month.
They may have just missed it the first time. Keep the pressure on. If you can go private I throughly recommend it! Sending my love, you’ve had a tough time x
Aw thank you. I don’t actually know to be honest, because it’s happened since I was a kid everything feels normal to me. But I do suffer from diarrhoea when I’m on my period, I also sometimes have a burning thigh pain which has actually sent me to a&e before and they said it was maralgia parasthetica (apologies for the spelling😂). And horrible period pains but I think I may be used to the pain now haha.
I’m so pleased that you finally managed to get a diagnosis, it is such a long and painful process. We shouldn’t have to suffer for so long. Im so happy you have 2 babies, that is so lovely. I’m definitely going to put the pressure on. I’m waiting for an appointment from the recurrent miscarriage team and apparently they test for endo so hopefully this may be a different route to a diagnosis.
Wishing you all the best for your next laparoscopy. Lots of love to you 💕 x
I think some good scans might help you. Done a by a real specialist sonographer not just a non specialist who doesn't know what to look for. You shouldn't have had a lap without a scan and a colonoscopy won't show up endo as endo grows on the outside of the bowel so even if it is severe bowel endo it won't show up with that.
An MRI or TV ultrasound with a specialist sonographer will show it. You can pay and get this done priavtely and in a week or so you will know very clearly what is going on with your endo.It's a good thing you had a colonoscopy though because that rules out a lot of other things.
I have really bad bowel endo which causes me lots of pain but I never bleed from my bottom. I think symptoms are pretty varied.But an MRI should show you where the endo is and that will show your gynae what options he/she has to treat it.
I'm so sorry you have had misccariages like that it is an awful experience. It could be the two things are related I think adenomysiosis can make miscarriage more likely and it often goes with endometriosis but normally affects women older than you. An MRI would show that up too. But as buisquits says it could be something else quite unconnected.
Get yourself reffered to a good gynae who specilaises in treating endo. He /she will also know about fertility. You will need to insist on this to your GP and not accept being fobbed off.
Try not to be too terrifed, endo is incurable but you are young and it has been identified early.If you get good treatment now things can really improve for you. Good luck xxx
Thank you so much for this. I’m going to really push to have an MRI scan again, I had one so many years ago that I feel things have definitely progressed over the years.
I’m so sorry you have to suffer with this, it is such a horrible and very lonely thing to have to deal with.
I’m waiting for an appointment with the recurrent miscarriage team which apparently look for endo so I’m going to use this as a starting point as my GP doesn’t think I will be waiting too long. Then after that (if I haven’t got anywhere) will look at going privately. It’s really taking a toll on me now not knowing what’s going on with my body.
Not at all MFB . If you don't get anywhere with NHS for you scan I have deatils of a brilliant place I paid and it cost 400 pounds but it was well worth it sonographer was amazing talked me through all the findings and sent me reportthe next day so now I'm just trying to decide on a good surgeon.
I'm so sorry for your miscarriages. But don't give up hope they might be caused by something different and totally fixable. Things will get better and you will feel better if you can take control a bit and get the ball rolling into investigations.
Hoping so much that you feel better and get. some help very soon. Sending masive hugs xxx
Oh that is fab, yes please would you be able to send that to me please? 😊 thank you for you help, you have made me feel a lot better about it all.
Yeah my partner keeps saying it could be something so simple which I’m really hoping it is but from the amount of blood which has passed through my bottom from this miscarriage I’m really feeling it’s not going to be so simple☹️. There’s barely any blood coming from the vagina. But hopefully somebody knows what is wrong and can fix me🤞.
I am so sorry to hear your story. Back in November I had laparscorpy surgery removal cyst of 8 cm endometriosis and another on my bowels (rectovaginal). I was diagnosed through laparscorpy surgery.
Before my surgery I completely didn't know anything thing about endometriosis. Before my periods or after my periods I bleed through my rectum.
It may be recommended to see a endometriosis specialist, they are much more trained in the area then a gynecologist, get your GP to refer you and tell her or him your symptoms.
I don't know if you are seeing anyone about why you are having miscarriages, it maybe linked to endometriosis I am not a specialist, just a guess, but it's worth to see a gynecologist or a specialist what the coursing you to have miscarriages.
I don't know what it's like to lose babies, as I can't have any due to other health problems, endometriosis and my age.
My heart ❤️ goes to you and I hope that you will have a successful journey.
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