Could I have Bowel Endometriosis?

[Rachou]

Hello,I’m wondering if I have endometriosis but just not sure! I’ve been looking at past discussions here and a lot of the comments around bowel endometriosis are really relatable.After struggling with feeling really tired, light headed and often nauseous/ breathless plus increased period pain (mainly on my right hand side, real tightness in my pelvis, particularly underneath and pain going down my thigh, almost sciatic type pain at times in to my leg and foot), I had an appointment with a practice nurse who examined me (this was painful when pressure was applied to the right hand side too). I had blood tests, all fine other than low iron - I don’t have particularly heavy periods so despite them suggesting this could be the cause, I don’t know how! I’ve also today, had a transvaginal ultrasound, all my ovaries are fine (apart from my left one being tight to the wall - whatever that means!) No obvious legions on my uterus, she did mention some discomfort I had at one point was because she was pushing against some gas stuck which could cause discomfort…I’ve been on iron tablets for a few weeks now and my symptoms feel like they have got worse since then, reading other people’s post here, I’m wondering if this could link to bowel endometriosis? I had my little boy via emergency c-section and for months afterwards would get excruciating pain when going for a poo, be sat for ages with cramps, diarrhoea, feel sick sometimes retching…I’ve had the odd bout of this over the following 6 years but nothing regularly anymore, thankfully! I do struggle with constipation and the iron tablets have made me even more constipated so wondering if that has increased the discomfort since taking them…it’s all frustrating and making me feel a bit crazy as nothing seems to provide any answers…thanks for reading. 

[Endolemon]

I have all your symptoms and I have Endo around bowel. I have severe stage now. Ultrasound showed nothing. MRI showed deep Endo. It has been a long journey till diagnosis.

You should complain to your GP about all your symptoms and ask for a referral to Gynaecologist.

I am using laxative Movicol sachets ,it is very soft xx

[Rachou in reply to Endolemon]

Thank you so much for responding; really, really appreciate it - I’ll now push for the gynaecology consult xx

[primrose81]

I had my ovaries removed 3 years ago and at the same had lesions on my bowel removed; I knew I had endometriosis after I had a C-section with our first child- the surgeon said it was amazing I had conceived as one Fallopian tube was completely blocked and the other not much better… and all because I had endo, I had never heard of it before and assumed the excruciating pain I had with periods was normal…anyway, yes, you could have lesion(s) on your bowel, ask to be referred to gynaecologist. Prune juice is brilliant to help with constipation and is surprisingly palatable ( but do go for good brand and not the cheapest one). Hope you feel better soon.

[Rachou in reply to primrose81]

Thank you so much; honestly I’ve felt a bit crazy the last few weeks especially so your response is so appreciated! Definitely will give the constipation tips a try as I definitely think the iron tablets causing that is making the symptoms particularly bad right now. Xx

[Nancypants]

Hi Rachou, I'm from the States, but have had 3 surgeries for endo. I had endo on my bowel, uterus, ovaries, fallopian tubes, cul-de-sac and bladder. Interestingly, I too had a c-section and about 15 months after, noticed a collection of symptoms you describe was growing increasingly more frequent and in severity. My specialist who was a fertility and endochronologist performed surgery and aside from more endo, and a chocolate cyst on my right ovary, I had so much scar tisssue in there from the c-section, he said "you would have never gotten pregnant, your uterus was so engulfed in scar tissue and pulled off to the side." He also informed me that some people make more scar tissue than others, and I seemed to be one of those people. Don't live in pain, keep pushing for answers. I wish you well. I have received a lot of support from this website and the women who contribute over the years!!

[Rachou in reply to Nancypants]

thank you so much for you response; that all sounds awful but glad you got answers. My scan yesterday showed my ovaries & uterus are healthy (with only the comment about my left ovary) so that’s something at least! But I’m definitely going to push for a gynae appointment now after everyone’s supportive comments here xx

[Avourneen]

The ovary being stuck to the wall is a very strong indicator of endo.It sounds like your scan was done by a sonographer who isn't used to reading scans for endo. You need a scan by someone who knows what they are doing and an appt with a good gynae.

[Rachou in reply to Avourneen]

Thank you really appreciate your comment; she said it was close but not stuck? She did said only severe endo shows on scans I.e. uterus scarring / pulling together / ovaries stuck etc. x

[Avourneen in reply to Rachou]

I'm not entirely sure but I think that endo on the bowel is a very strong indicator of quite serious endo. It usually grows over the pelvic area first. There are different grades of sonographers general ones, ones with higher level quals and a small number who specialise in gynaecological scans. I know that scan results can be very variable depending on the sonographer, I had a scan with a non specialist sonographer who said I had very few problems and had stage 2 endo and another by a very good sonographer who diagnosed stage 4 endo and very severe endo through the bowel. Glad yours doesn't look too bad but if you think it's on the bowel I'd look into it in a bit more detail. At least see a specialist gynae.

[Rachou in reply to Avourneen]

Thank you for your reply - I think the gynae is definitely the next step to determine if it could be endo or not xx

[ccfd9]

Hi, it sounds as if the iron tablets are not helping at all. You need to sort your digestive system out and the best way is to consult with a good nutritional therapist who understands all about endometriosis and how it can effect the bowel and what you need to eat to ease your symptoms and relieve your constipation and pains. Dian Shepperson Mills has helped thousands of endometriosis sufferers and can be found at endometriosis.co.uk

[Rachou in reply to ccfd9]

Thank you for replying, I’ll take a look! X

[FiBeee]

From my experience, it’s hard to see endo on scans although I had some show on an MRI. The best way to be diagnosed is by laparoscopy. I’ve struggled with doctors understanding my endo pain for about 40 years now. But fortunately I was referred to a gynaecologist that specialises in endometriosis. I gather there are specialist endo centres popping up throughout England. There you’re seen by a gynaecologist and a gastroenterologist. I wish you the very best of luck.

[Rachou in reply to FiBeee]

Thank you so much for commenting; that sound really frustrating, the lack of decent womens health management makes me so angry xx

[FiBeee]

Really hope you find some good care. I’m about to go through it all again starting with a gastroenterologist and am girding myself for the inevitable misdiagnosis, so I feel your pain xx

[Rachou in reply to FiBeee]

Good luck - I think the mental battle of dealing with the repeating yourself, feeling dismissed is half the battle, isn’t it! Xx

[sadmonkey]

Hey! I'm really sorry you're having these symptoms! This post is very relatable. Constipation is the #1 marker and predictor of fertility issues (PCOS, Endo,...)

First of all- go private for your scans. Go to a real gyno- sadly the free healthcare in this country is just not sufficient, espeically when caring for women's issues.

Secondly, I would stop taking the iron pills immediately. I had a similar issue & started seeing a holistic practitioner who specialises in endo, pcos & women's issues (vivana natural health). She said that this is a common way for NHS to 'treat' low iron which can exacerbate issues related to your symptoms, not treating the root cause of why you have low iron in the first place.

Root causes can be as simple as your body not absorbing nutrients due to a poor gut health (80% of your immune system is in your gut). If you don't absorb nutrients fully in your stomach- you could end up with years and years of backlog of deficiencies like iron, magnesium, potassium- all important building blocks for repair and healing of old tissue in your body. This is just one of the many things that can be causing your symptoms.

I used to have similar symptoms to you- extremely painful period, constipation, bloating/painful gas, low iron. She helped me with all of those within 3-6 months. I'd give it a go- it's an investment but it sets you up for future health- it doesn't just stick a bandaid on like the NHS does (they prescribed me blood thinners for my symptoms haha).

Of course, I'd incorporate both private specialist and a holistic doctor- one to help take care of the acute problem at hands and the other to make sure your body will not produce more endo tissue & is able to heal from this.

Feel free to message me if you need anymore support!

[Rachou in reply to sadmonkey]

Thank you so much for your response - I’ll definitely look in to all that! Xx

[primrose81]

I am so glad to read all these posts and to know that endo is taken seriously these days and that there are a lot of specialists and help out there for sufferers. I am 71 now and back in my day there was nothing like that and I soon learned it was easier to suffer in silence. Didn’t help with school attendance though - I was absent so much! Good luck Rachou and hope so much you can get the answers and help you need xx