Hello! I’m new here and this is my first post. I guess really I’m just looking for a little advice as I’m really frustrated and feeling quite low at the moment.
About four years ago, whilst undergoing fertility investigations, it was discovered that I had a 10cm endometrioma on my left ovary and some endometriosis on my right. I used to get a lot of pain and bleeding after sex or if I went running. I had open surgery to have it removed and the other areas cauterised. After about a year of recovery, I started my IVF treatment and I’m pleased to say we were successful in conceiving our beautiful little boy who will be 2 in January. Since his birth, my periods have been getting progressively worse and I have developed a new symptom. On the first or second day of my period, if I need to have a bowel movement, it is incredibly painful to the point where I nearly pass out. In fact, I have fully lost consciousness three times with it. The first two times, I was lucky and managed to stay seated on the toilet, just slumping into the bath and rousing quickly. The last time it happened was three days ago and I fell on to the bathroom floor, hitting my head on the tiles. This really gave me a scare! My partner heard me fall but he had only been home for a couple of hours, so if it had been any earlier, I could have been lying there for much longer! It took approx 20 minutes for me to fully recover as the blow to my head had significantly affected my vision and my partner informs me that my speech was very slurred and I seemed quite groggy. When I went to bed that night, I had the worst headache of my life! On reflection, I probably should have gone to Hospital for a concussion assessment, but we didn’t really think about the seriousness of it at the time.
Anyway, (Sorry, I’m rambling!) I would just like to know if anyone else has experienced similar symptoms and what did it end up being? I have read a little about endometriosis on the bowel and one of the main symptoms is painful bowel movements. I went to my GP over two months ago for a gynae referral, but there have been multiple delays (including an ultrasound report that was never received, and my GP leaving the surgery)... I’m now back to square one, needing to make another GP appointment to explain it all over again and see if they will write up my referral. Working full time, it isn’t easy for me to get time for appointments, so I’m finding this all very frustrating.
Any advice or similar stories that anyone can share would be greatly appreciated. I’m feeling pretty low about it all at the moment. Thank you.
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EllisaurusMum
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Hi. I have exactly the same thing. Its strange reading your post because ive never hear anyone describe exactly what I suffer from. I have had this particular symptom occasionally for about 20 years!.. it has become more frequent in recent years especially after I had baby 6 years ago. It has also now happened to me at ovulation. I was diagnosed with endometriosis of bowel and ovaries in August this year and am now waiting for MRI so they can assess penetration of the disease into bowel before planning surgery.
I have to say that dietary changes and avoiding alcohol at that time of month has reduced frequency of these fainting episodes. Also increasing dietary fibre and probiotics. When im due period I only eat light foods so as not to tax bowel. My consultant said lactulose can help too. I found natural alternative called MotionPotion so I'm going to try that. Its important to keep bowels moving and minimize constipation (period hormones can cause constipation). I also take ibuprofen the minute it realise it is happening..
When it happens to me I cold sweat, lose vision and ears hiss and I shake.. once I have bowel movement if I dont faint I lie on floor cramping for about an hour. Then magnesium bath to help me lie straight again. Then I always pass out for a good 2 hours from the exhaustion and pain! I tend to then be weak all day but pain massively reduces. This pain is like childbirth. Its absolutely insane!!
Oh god, sounds like you’ve really been through it! Thank you for sharing your story and advice. The tips about diet definitely make sense as it seems to be pressure on my rectum that causes me to pass out. I’ve also got IBS and saw a dietician to help identify my triggers. Since then, I have it much more under control and I try to be extra careful when I’m on my period. I was looking into the BSGE accredited Endo Centres and it turns out the Hospital I work in is one, so I’m going to try for a referral through the occupational health department. Hopefully, they can get me seen by the right people soon.
Yes I had this intermittently but it was increasing in frequency and them it all made sense when I went to GP with bladder issues actually she did and internal exams and found a recto vaginal Endo nodule. It turned out it had stuck my bowel to my vagina and had distorted the bowel out of shape.
I had unsuccessful trials.of mirena and zoladex and finally had the quite extensive excision surgery in mid July.
I've not fainted or had bladder issues after the first 2 weeks post op though I have developed reflux esophagitis from the abdominal pressure of the surgery viral meningitis and ibuprofen. It was major surgery and I've yet to return to work but luckily escaped a bowel resection by a whisker though needed major vaginal repair work.
I’m pleased your surgery has been successful so far and I hope you more fully recovered soon. The more I hear about bowel endo, the more I’m convinced that’s what is going on with me. It seems too much of a coincidence that it only happens when I try to pass a stool and I’m on my period. I’ve emailed my manager today to see if she can put a referral through occupational health as the hospital I work in is a BSGE accredited Endo Centre. I really hope that they can refer me as things are taking way too long with my GP.
Wow that would be great if you could. I was misdiagnosed by a general gynae first off but the BSGE centre have been excellent and if it's deep infiltrating endo you'll need to be seen there anyway.
Yes, it definitely sounds like you've got bowel endometriosis. I've been suffering the same symptoms as you since 2013. To begin with my GP thought I had bowel cancer and I ended up wasting 2 years seeing a bowel specialist who concluded, after running a number of tests, that I had constipation! In the end I diagnosed myself with endometriosis and was finally sent to see a gynaecologist. Please don't wait too long to see someone. During my recent lap it was found that I have adhesions everywhere, but especially all over the pouch of Douglas which was found to be 'obliterated' to use the surgeon's terminology, as well as an 'infiltrating' 3cm nodule. No wonder I've been in so much pain like you!! Apparently the longer you leave this kind of problem, the more likely it is that permanent damage to your bowel could be caused. So....please don't be fobbed off by anyone and please insist on getting an appointment as soon as you can.
Thank you so much for the advice. I definitely feel like it’s getting worse every month and I’ve pretty much reached the end of my tether with it! It seems so difficult to get the right diagnosis or to see the right people, which I find crazy considering how common it is! Given my history, I thought they’d just refer me straight away, but it’s been two and a half months and I’m no further forward. How awful that you were led to believe you had cancer!! That must have been so stressful and frightening for you! And then to be told it was just constipation... I think I would have punched somebody! Haha! I’m going to ring my GP first thing in the morning and try to get a same day appointment. I’ve also got my manager trying to refer me through occupational health as the hospital I work in is a BSGE Endo Centre... hopefully, by pursuing both routes, I will get a gynae appointment soon.
I totally agree with you....looking back at the way I was misdiagnosed I'm truly astonished at the level of ignorance there is amongst the medical profession. Considering I clearly explained that I only had rectal bleeding and only had these excruciating pains when I was having a period it should have been OBVIOUS that it was a gynae problem!! Yes, the cancer diagnosis was a real shock...as was the conclusion that I only had constipation!!! For heaven's sake!!!
Yes, please do phone your GP first thing...it's also great that your manager is on your side and will be pushing for an urgent gynae appointment. I just wish we didn't have to always fight to get anywhere....as you say, so many poor women suffer with this dreadful disease and yet it's so hard to get treatment!! Wishing you the very best of luck with everything in the meantime and remember, don't take 'no' for an answer!!
Thank you for all your encouragement and support. I managed to get a GP appointment first thing this morning, but I really don’t think he had a clue what I was on about! He was so busy trying to be quick and get through the appointment that he just wasn’t listening to what I was saying! Then he kept asking me a question just as he was about to take my obs, then telling me to be quiet when I went to answer him because he needed to listen to my heart/chest/etc! 😡 I asked him to refer me to my place of work which is not local to me and he said it would be fine (which I found strange as I know it’s a little more complicated when it’s outside of their region)... lo and behold, I got a phone call from him ten minutes later to tell me that I couldn’t get a referral to that hospital. 🤦🏼♀️ I had to be really forceful with him and explain to him all the reasons I wanted to go there. He figured out how to do it in the end. The last thing I would have wanted was to be referred to a hospital that were as clueless as him about it all! I’m on my way into work now and hopefully, there’ll be an email waiting for me about an occupational health referral... then I’ll just see which one comes through first! 😊
Many thanks for coming back with this brilliant news! Well done you for being forceful and sticking to your guns!!! Yes, I'm afraid to say that your GP sounds about as useless as mine...and the thing is that they never admit they don't know anything about endometriosis (or anything else for that matter), they still assume this air of 'Doctor knows best', even when patently that's far from true!!! Crossing fingers you'll be treated by someone very, very soon....keep on pushing!!! Wishing you all the best and very well done again!!
Thank you so much for your kind words. The responses I’ve had have really helped put my mind at ease and made me more determined to get seen by the right people. Take care of yourself and thank you again for all your support and advice. X
As some others have said, please please don't let any doctors fob you off with this. The picture you paint was me about 20 years ago, and lasted about 10 years without my Endo being discovered, being told I just had IBS etc. Until I eventually ended up having emergency bowel surgery and s stoma. The Endo had spread and strangled my bowel completely. If can be hard for the Endo to be spotted if it is in a hard to reach place deep in the bowel or pelvic wall. But if it is already known you have a history of Endo they must must take you seriously and keep looking to make sure they can act on any bowel Endo as sonas they can. Stay strong, stay assertive. You know your body best. I gave up going to my doctor which is why it got so bad in the end. Don't be stubborn like I was! My surgery was the best thing I ever had done in the end and sorted my bowel symptoms, but it shouldn't have taken that long or need to be that extreme. Good luck x
Wow, well done for being so strong and getting through all of that! I’m so sorry that you suffered as long as you did. It really is shocking how long it takes for it to be recognised and to receive treatment. I really hope that my referral doesn’t take too long. I keep thinking how lucky I was on Friday that I didn’t injure myself more seriously... I’m terrified of my period now! Xxx
I remember that dread. But be assured there is likely to be something that can be done to improve your symptoms if they keep looking and find where it is sooner rather than later. For me, I had a a large part of my bowel removed and most of my rectum. I had a stoma for about a year. It all sounds scary but in fact I felt so well after the surgery I almost considered keeping my stoma! But I did get plumbed back together again and the stoma removed. Sadly I did go on to have other Endo symptoms with other parts of my body but my bowels have been fine ever since and I have never suffered pain and fainting like I did back then. I look back now and can't believe what I put up with! Good luck with your appointments. Go prepared with notes, examples, a diary of symptoms if you can. And don't give up. X
Thank you so much. I am pleased I posted on here... all the words of encouragement and hearing other people’s stories, has made me feel so much more positive about it all. It’s so reassuring to know I’m not alone. I’m pleased that your bowel symptoms have improved. It sounds like you went through a really tough time, but it’s lovely to know that it was worth it in the end. That’s great advice about keeping notes and a diary of symptoms... I’ll definitely do that in preparation of my consultation. Thanks again and take care of yourself. X
Hi ladies. First time posting. I am going through a similar thing. I started with rectal bleeding every time I have my period almost 2 years ago. Over the last year having being referred to colorectal surgeons I have had a colonoscopy, ct, mri, 3 x flexi sig with endoscopic ultrasound, these have all confirmed the presence of a lesion in my colon wall but biopsies have been non diagnostic.
When I have asked if this could be bowel endometriosis given that my symptoms are cyclical with my menses, and only with my menses, it has been dismissed as highly unlikely (I have no prior diagnosis of endometriosis so it is quite an unusual, but not impossible presentation). I was beginning to feel like a crazy lady and beginning to feel like maybe this was something else...
They have worried me sick talking about GIST (a rare sarcoma), possibility of chemotherapy, and advised the next option is for endoscopic surgery for excision/biopsy of the lesion. So last week, I went for a FOURTH flexi sig so the surgeon could see the lesion for himself and tattoo it in prep for surgery. As it happens he was unavailable to do the procedure and it was carried out by a different surgeon... who saw something different ... guess what! Erosions characteristic of endometriosis!! He asked what my symptoms were and really believes this could be what we are looking at. They took further biopsies which I now have to wait up to another 6 weeks for results, which again may not be diagnostic, but I am just so relieved that someone finally seems to be listening and looking at the whole clinical picture. However it has taken a long time to get here, it has been a very frustrating, distressing and quite frankly exhausting journey to get to this point. I'm not sure what the ongoing management will be, but I would expect a referall to a BSGE centre.
It has helped me to read other people's experiences on here and not feel so alone. And I guess what I really want to say, as others have said, know your body and do not be fobbed off and don't be afraid to push and ask for a second opinion.
I’m so sorry that you have had such a torrid time of it, but I’m pleased for you that you finally have someone paying attention to your symptoms and the overall picture instead of just homing in on the bowel stuff. Fingers crossed that your biopsies come back with some answers for you and you start to receive the right treatment. It’s awful that women have to battle so hard with their healthcare providers and go through so much before they finally recognise that it’s endo. I have everything crossed for you that you will soon be symptom free. X
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