No periods. Bowel issues. Endo? - Endometriosis UK

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No periods. Bowel issues. Endo?

Adora12
Adora12

Hi all! After seeing a gynecologist 10 years ago for long painful/heavy periods and extremely painful sex, it was suggested that I may have endometriosis. The outcome was an ultrasound that came back ok and that the painful sex was psychological. So I carried on dealing with it.

3 years ago I was put on the mini pill that has stopped my periods completely. I still have frequent abdominal pain (feels like period cramps). For years I've also suffered with daily diarrhoea and severe bloating. I went to see my GP in February because it was getting out of hand and I've absolutely had enough. They're saying it's ibs and I'm currently waiting on a flexi sigmoidoscopy appointment.

My question is, even though I don't have periods anymore, what if I did have endometriosis and could it have spread to my bowels? Should I push to see a gynecologist again.

I'm horrified by some of the stories on here and so sorry you're all going through this. Thanks for reading!

12 Replies
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The thing is the endo symptoms which affect the bowel are close to ibs symptoms. My GP was really on the ball when I told her I had painful sex and past watery blood she referred me for scan and to gyne for lap. Have they even had a laparoscopy to rule out endo?

I was diagnosed 27 years ago and after 6 laps and being on the progesterone pill for many years thought my Endo journey was done. Despite starting the menopause due to ongoing pain/bowel issues I had a further lap and discovered that I also had adenmyosis. Two years later with a flare up of pain it was recommended that I have full hysterectomy whereby I was told that my bowel was actually stuck. Each Endo journey is different but many of us have very similar issues.

Hi sorry to ask but I'm having a hysterectomy in 10 day for a similar scenario as yours. I already have bowel problems. How did you op go and did they sort out your bowel. I'm a bit nervous now. I haven't had a lap but my doctor suggested endometriosis. X

I had a laparoscopic/vaginal hysterectomy with removal or womb/ovaries. To be honest the hysterectomy wasn’t that bad, I was discharged after 2 days and up and about within 2 days of being home with no pain killers just antibiotics for a week. I resisted HRT for 3 months but the symptoms were quite severe so still trying to figure out what dose I need to be on combined with lack of HRT supply nationally. Had similar pain issues in lower corner left hand side and found I have polyps in both bowel and rectum. Waiting to see consultant about this. Good luck with everything xxx

Thanks. Hopefully I get a few answers after the hysterectomy. I do hope you get s bit relief soon as it's just so frustrating. He did mention I wouldn't need HRT with having full removal but may only need something else but cannot remember the name. Too much to take in. Hope your wait is not too long xx

I thought I would be ok without HRT and resisted due to the oestrogen but within a few weeks the menopause kicked in full force and the symptoms were horrendous. The sweats were unreal and combined with the disturbed sleep I felt I had no choice. You may be lucky and have little or no symptoms xxxx

Firstly the painful sex is real and NOT psychological, it effects both partners.

The bloating and diarrhoea can be linked to endometriosis especially if it coincides with your period or ovulation. Either way it could be that there is something in your diet that is increasing the inflammation. You should think about what foods may be upsetting you. Research done at the Endometriosis and Fertility Clinic (endometriosis.co.uk/ ) showed that wheat or gluten upset 80% of endo sufferers and that bovine dairy upset almost 60% of sufferers. So try avoiding wheat, gluten and bovine dairy (milk products from a cow) for about 6 weeks and see if that has an effect on your bloating and diarrhoea.

Adora12
Adora12 in reply to ccfd9

I did try the low fodmap diet for 6 weeks, unfortunately it didn't change a thing. But maybe it's worth avoiding gluten and dairy for a bit longer.

Your journey sounds very much like mine, it took me 20 years to get a diagnosis. Initially my periods were incredibly heavy, bloating, pain each month then as I got older the bowel issues became a bigger problem, my periods got lighter but the pain was unbearable.

One doctor saved me as she asked why I didn’t call an ambulance after I had collapsed on the bathroom floor with pain. I told her the stories about it ‘being normal’ she was furious and immediately pushed for a laparoscopy as scans do not always pick up endo.

Fast forward my laparoscopy was done and I had endo and lesions on both sides of my pelvis and on the pouch of Douglas (near bowel).

I live on a dairy free, gluten and soya free diet and it has changed my life. I would recommend reading up on the endo diet - I don’t follow it to the letter but just these adjustments have worked wonders.

Push for you diagnosis - you need a laparoscopy and no two endo journeys are the same. I’ve had less endo than some and more pain and more than others who have more pain than me. Do not compare your symptoms to anyone, it is your body and it’s telling you something isn’t right xx

Sounds just like my story.. Took me 7 years to diagnose.. As all started with bowl problem on and off.. Scan doesn't show endo.. Even MRI can miss it. (it didn't show on my MRI) only one way to diagnose it is laparoscopy. Find more information on Nancy Nook Facebook educational page. 🍀

Hi, sorry to hear about your story. To me, this sounds like it could definitely be endo.....possibly. So it’s worth going to an expert. A real one. In my case, I went to 23 doctors, including tons of gynos and gastrointestinal doctors who all either told me I had something else like IBS, or who tried to treat my endo with pills or ablation surgery. Luckily I ended up meeting with an excision specialist who could see the endo in my scans (which no other doc or radiologist could do) and cleared my pain and symptoms within an hour of excision surgery. The key word is excision in surgery. Diet has also greatly helped my “IBS” symptoms. Going on the low FODMAP diet and AIP diet (although extremely strict and restrictive) changed my life completely. I really hope you find whatever it is that’s causing your symptoms, and I hope that you get the right treatment as most of us end up going through rounds of ineffective hormonal treatments or ablation surgeries before even learning about excision, diet, massage, etc. I highly recommend checking out Nancy’s Nook on Facebook and the Heal Endo website. These were my lifesavers.

It's endometriosis, which isn't visible on an ultrasound in most of the cases. It's not IBS, it's not in your head. Please get referred to an experienced BSGE-certified surgeon working with a team (you will need a colorectal/bowel surgeon present for your surgery and preferably a urologist and neurosurgeon too) or a Nancy Nook surgeon ASAP. PM me if you need names of extremely skilled surgeons

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