Chronic Fatigue in Pelvic Pain Disease - Endometriosis/IBD/Bladder Pain

Hi everyone,

I am new to this group, and am hoping for some help and support from seasoned pelvic pain sufferers. I will give a bit of background of my medical history, and wonder if there is anyone who can relate with any aspects with confirmed diagnosis of IBD or Endometriosis who could give advice on how best to manage please?

My problems began when I was pre-pubescent, at which point I was anemic. I went on to have heavy, irregular, painful periods, and became prone to fainting. As I grew older the anemia resolved and I have never had any issues like this since.

However, over time my irregular periods became worse until approximately nine years ago when I was referred to gynaecology. I had symptoms of painful periods, continual bleeding, heavy bleeding and painful intercourse. After many tests I was told I most likely had endometriosis. I have since been treated hormonally with the combined pill (previous negative experience with progesterone contraceptives), and was advised against a diagnostic laparoscopy by the gynaecologist at that time.

I was then referred to urology around 5 years ago following a series of episodes which mimicked those of a severe UTI with back pain and chronic microscopic haematuria, and was then diagnosed bladder pain syndrome. I was treated by Toltredine, followed by a bladder distention which both failed, and until 2 months ago was managing my urgency using Mirabegron (Betmiga). The next recommended treatment is bladder installations, which I have been reluctant to have.

In the meantime my general health declined, my pain increased across my back and pelvic region into my hips with mid-cycle "flares". I also began getting severe regular pins and needles, migraines, dizziness, recurrent nausea, and I caught countless infections. My periods became worse again, I bled mid-cycle and often through my clothing on my period. Blood tests were all normal and the doctors refused to believe this could be related to the previously suspected endometriosis.

In 2020 I then developed severe chronic diarrhoea. After many mishaps by the GP to rule out anything other than suspected IBS, eventually my calprotectin level was found to be approx 400 (not during an diarrhoeal episode). A colonoscopy performed in 2021 then revealed mild-moderate inflammation of the terminal ileum. I was referred to the IBD team for consultation last Autumn and will eventually be seen later this month for discussion about further investigations.

In the meantime I seen a private Endometriosis Specialist Gynaecologist regarding my period health and generalised feeling of being unwell. He agreed my symptoms were consistent with deep-infiltrating Endometriosis of the bowel, bladder and utero-sacral ligaments. However as my private MRI was clear, he could not place me on an NHS list for his practice due to demand. A letter was written to my GP and I was referred to general gynaecology for laparoscopy as I could not afford the private surgery. I expect to be seen in Nov/Dec this year. Itried an anti-inflammatory diet and was also prescribed Dienogest (Zalkya) which I take in combination with the mini-pill (Cerelle), since January this year.

Following this treatment my flare pain improved gradually, but I still had a daily deep ache in my groin. My periods have now stopped completely, as have the flares. However, my mental health plummeted and I became exhausted. I work full-time shifts in the NHS, am undertaking a part-time master's degree and got married this year, so I initially blamed stress. I had 3 month sick leave earlier in the year to recover, during which I was trialled on codeine and amitryptiline to help with pain, insomnia, dizziness and brain fog. I went from sleeping for up to 4 hours to 12-14hours a day and was still crippled by exhaustion. Another GP consultation concluded I could have neuropathic pain potentially associated with endometriosis and chronic fatigue. I was taken off the painkillers and prescribed a low dose of Duloxetine. Although not a miracle pill, I improved enough to get back to work.

However, I am still suffering exhaustion. I regularly fall asleep on the sofa after work, have little energy to contribute to housework or social activities, and have a nonexistent sex life with my poor new husband (pain and exhaustion related). My work pattern was altered to take me off 12 hour shifts, but I don't think this has been helpful so far and my sickness record has become abysmal. This is distressing as I am a very career oriented individual. I have also began to experience stiff and sore joints after waking, and my legs feel heavy and tired at night. Any strenuous activity completely wipes me out. Recent blood tests are normal, and the GP has no helpful advice except to come off all of my existing medication. I already worked hard to whittle down to just 3 pills from what was initially 11 different medications to cope with flares and pain over the past year

( Dienogest, Cerelle and Duloxetine).

I wonder if anyone can relate to my symptoms, and in particular the fatigue? Especially if you are on the same medication or have a diagnosis of endometriosis/IBD/painful bladder. Any helpful tips to help cope with the exhaustion would be appreciated, or even just to know that this is a normal symptom of these conditions that can be managed after I have firm diagnosis of endometriosis or IBD (or both) would be re-assuring.

Anyone who can share experiences that can help fight my case with the doctors would also be helpful. I am a medical professional with good knowledge of medical terminology (but not a Dr) and have had to advocate every single part of my care thus far, so please share any of your experiences if you can relate in any way!

[Thunderbird5]

One suggestion is to try if you can to get an ultrasound with an expert in the area. It is possible for it to be visualised and then you can use it as evidence to say you have severe endometriosis and need tertiary referral to a BSGE centre for surgery. I didn't follow that route but I know others have. Dr Susanne Johnson NHS and private Southampton area (her website shows the images they can get) or Mr Tom Holland London NHS and private and there are a small number of others in London at the private gynae places. I had severe rectovaginal endometriosis & bowel surgery with Mr Khazali at the BSGE centre he was at (now only private). Good luck

[VeraSa]

If you have an IBD, it is important to get it under control. Getting into remission should be a priority, as active inflammation can cause other organs to get crazy. IBD is a immune system overreaction and there isn't a special diet for. Some people can eat everything, some not. Me, for example, Ie can eat today a burger without problems and tomorrow I spend the whole day and night on the loo. But fresh butter is always a no no. For everyone, IBD is different.

IBD causes fatigue, sleeping problems, skin problems, lack of vitamin D (and others) - that can cause depression ... almost everything you can think of.

But there is lot of medication, that can help you to get back to "normal" life.

There's a saying, that the bowels are the heart of your body and if this ain't work properly, nothing else does, too.

The IBD research and treatment in the UK is enormous and better than in other European countries. (I've lived in few countries and can tell you stories about different treatments)

But by far, my IBD team here in Salford Royal cares a lot. Even tho I waited for more than one year, but that's because of covid.

Stay strong!

🙂