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!

[Bespp]

Hiya, my goodness what a journey. Well done you for going this far as I know how difficult can be. Was reading through and I wondered did they even tested the thyroid levels as part of your investigation? Something that can contribute to fatigue for sure. What about sleep do you think is restful? I find it with myself that I might be in bed and think I am sleeping but actually Is not a good nigh rest for me. Magnesium helps a lot with that. Did they ever tested for all your minerals levels vit D, potassium, vit b's levels etc? For me personally once I got all this in order fatigue has decreased a lot but could be a personal thing. Probiatics supplementation has helped a lot with tummy issues and the most recent one was that I was blaming endo all along for all the back pain/ leg pain but after an Mri i discovered I had an l4/l5 foraminal stenosis which was causing all the havoc. ( I have stage 4 deep infiltrated endo) and I am under no medication.

Wishing you get to the bottom of all this soon not a nice way to live.

[Hidden in reply to Bespp]

Thank you for taking the time to read and reply!I have had my blood tests for vitamin levels and thyroid, blood count etc. so this is not the issue. From what you have mentioned I think I may give some magnesium supplements a try though, it can't hurt! Sleep is definitely the best cure, and I feel that mines is evidently not restful enough if I can't stay awake all day.

Oh dear! Sound like you have also had a tough time. It's interesting that your back pain turned out not to be endometriosis related. This is something I will definitely look into more. Thanks so much for sharing!

[CryBaby91]

Hey!

Yes your story echoes mine so so much! I'm surprised that the specialist ruled out the usefulness of a lap based soley upon a bloody clear scan! That is ridiculous. You could absolutely still have endometriosis and have a clear scan. So that's one thing. Deep infiltrating endo often appears on scans but it can be missed. I hope you don't have to wait too long for the lap on the NHS, I was waiting over a year. I will also note that the stage/severity of your endo has nothing to do with what pain you feel, you can be stage 1 and in crippling agony. Or you could be stage 4 and have no pain at all! It is a very strange condition lol.

Are you using anything like heat relief for the pain? Hot water bottles, plug in heated pads etc. Tens machine? I agree with the supplements and probiotics suggestion, they helped me with the bloating and nausea. Also yoga daily is a huge relief for me, it stretches my back out and helps my pelvis move more. If you go on YouTube there's so many free videos, just pop in "yoga for endometriosis" and there's specific stretches and poses for pain relief. Go slow and gentle, don't do anything that causes pain, it should feel good and bring relief not discomfort. CBD oil can also be super helpful, my gynae suggested this.

Fatigue is awful isnt it! I've not found anything that successfully helps get rid if I'm honest lol lots of rest between activities helps keep me from totally crashing, so whilst you're at work try your best to take a 5 min break just to sit down and have a breather. If that's at all possible!

Sex wise I totally understand, it can be hard for me and my husband too and has put strain on us as a couple at times. Do you have pain just with full sex or foreplay too? We do lots of foreplay because it is the best way for me to enjoy myself. I also avoid sex when I'm ovulating because that's my most painful time.

Oooh are you tracking your periods and matching up when symptoms flare compared to your cycle? I use Glow, it's fab for keeping an eye on what symptoms are worrying and when in the month i have them. Xxx

[BloomingMarvellous]

I can relate a lot to some of your journey and every sympathy for your situation. Like you I have a medical background and was for a long time acupuncturist working with infertility and pain relief in pregnancy. I’ve had some surgery for the endo but need an hysterectomy for adenomyosis but with NHS lists like many no idea of if and when. Mine was a very late diagnosis so hadn’t known what the actual root issue was lifelong. So finding relief has been key. I was at wanting to end my life with the immobility and pain which was utterly unbearable. I found that the heavy duty painkillers of whatever shape and form had ghastly side effects and for the most part limited short term relief. Tried different route allowing a 3 month trail of specific supplements and specialist physio. Off all the meds completely and much more mobile

[Ronsk]

Hi there, I have severe endo and ibs,I also have suffered from fatigue,stiff joints ,general body aches and pains and stiffness worse in the morning. Brain fog is terrible as well as other things.ive had a recent diagnosis of fybromyalgia. I think its all interlinked somehow. In my opinion.