Bowel endometriosis? In need of help, advice and your stories...

[TulipaBranca]

Hi all,

I am wondering what symptoms of bowel endometriosis look like in other people? I find some websites really generic and wondered if symptoms can differ.

I highly suspect I may have bowel endometriosis. I had my period at the age of 9 (I'm 25) and since then I have been suffering from intense period pain, bloating, constipation, diarrhoea, bowel movement pain, UTIS, heavy bleeding, constant tiredness and periods of extreme low mood. When I was 14 I was taken to the doctor's by my mum after not being able to stand up from the intensity of the pain I was feeling and having to miss school. The doctor put me on the pill and said it was all normal and that I was too young to have endometriosis (my mum has deep ovarian endometriosis and suggested it to the doctor).

At 16 I began to experience severe constipation (sometimes not going to the toilet for 5 days), followed by intense diarrhoea (not leaving the toilet for hours). My bowel movements became extremely painful and I would avoid going to the toilet if I could because of how painful it was. I also began to experience extreme bloating before my periods (about a week or two before), to the point where I looked heavily pregnant. Also, I began to suffer from recurrent UTIs. I would get about 5 a year.

At 18, after seeing dozens of different doctors who told me it was just gas, who told me I had to eat more fiber, that it was IBS, that it was nothing, that it was stress, that it was hormonal, that the UTIs were because of my anatomy, I started to rethink taking the pill and stopped it.

My symptoms became even worse... My periods became extremely intense and very disregulated. I continued to get extremely bloated and have diarrhoea, constipation, painful bowel movements, gas, headaches, intense shooting pain through my anus and extreme tiredness. Sometimes I experience spotting followed by periods that last 1 day only but where I bleed so much I cannot hold one tampon for longer than 1 hour. Other times I experience periods where I bleed heavily for 3 days straight. Other times I have a "normal" 5 day period starting light, becoming mild and then becoming light again. But all times I experience severe pain in my anus, back and lower pelvis and I go through boxes and boxes of ibuprofen, feminax and paracetamol only to find that they wear off within moments. I have horrible headaches, severe bloating before the period, low mood and all the symptoms I mentioned above. I manage to get to work but sometimes have to hide in the toilet so I don't show my pain. I struggle to walk or sit straight but try to push through it.

I still have recurrent UTIs and have been to the doctor's twice regarding anal bleeding. I have always been told it is all normal. While doing my smear test I asked if I could get tested for endometriosis and got told I was too young.

I am suffering a lot and feeling desperate, more than the pain, bloating and anxiety of it all, I just want the low moods to disappear.

I would really appreciate any advice I can get at this point... Thank you all so much and know that I admire each and every one of you for having to live through what you live through. You are all absolutely incredible.

Lots os love,

D.

[Moon_maiden]

HiThat’s a lot to have gone through. If you search the forum you’ll find very similar symptoms.

I’ve had constant constipation this year, lots of pain, etc. With periods over the years, pain, a little constipation for first couple of days once the main pain subsided.

First gynae could only do so much, thought it was in the bowel and then referred me to his colleague the endo specialist. An MRI didn’t show endo as bad as initially thought, but they are very good at not telling the whole truth. Endo gynae when I saw him didn’t think I had rectovaginal endo, during op he discovered it was there. The diagnosis and two ops have been in just over the last year, everything snowballed in the year prior.

Your hormones are likely unbalanced, which you’ll know can effect mood intensely

The endo UK site has great info, including that it can be hereditary. If you gather all your notes re symptoms and research together send a copy to your GP and request an appointment, or make an appointment and hand to them. It’s more amusing that way 😆 (sorry, bad sense of humour)

I’d go through a pain management routine with them, tell them you want an urgent referral as it’s been going on too long and an MRI to see what stage it is. This may rule out anything else as well. Blood test including Vit D, iron, B’s, hormones, plus anything else you can think of. 🙂 Your registered GP may respond better than someone else. If you can get a locum this can work out better as they don’t care so much about budgets.

Pain nurse said Tramadol was better than codeine for endo, if you don’t want opiates ask dr about Nefopam, it’s more expensive so they hesitate on prescribing. Pain consultant said Amitriptyline for nerve pain, helps a bit, but will depend on symptoms.

Not sure if any of this helps, but long winded 🙂

[Penguins_81]

Hi, your story sounds very similar. I know it’s already been said but get all your information together and go ‘armed’ to your gp and request that they refer you on. Regarding pain meds- don’t take NSAIDs as they can make UTI’s worse as it’s harder for your kidneys. Codeine will constipate you and do if it’s bowel endo it will cause even more pain later. If you can find a bsge centre near you, then ask to be referred to that hospital so that there is more chance of the gynae actually knowing about endo at the hospital and if it is severe they can refer you to their bsge colleagues.

Best thing you can do is research so that you have all the current research information and what your NICE rights are. There are lots of great sites which help with correct information. If you need help I can offer advice as to what I did to get seen and how I fought to get seen by a bsge specialist after general gynae told me there’s nothing wrong. I’m now waiting for major surgery and my bsge surgeon is amazing and couldn’t believe I’d had to get through so much to get to him. Our NHS is amazing but unfortunately not enough doctors including gynae’s know about endo

Please fight for your health- it’s exhausting but it is worth it. Xx