I wanted to share my recent experience with you all. Despite years of discussing my menstrual difficulties, including heavy bleeding, clotting, and severe abdominal pain, it took recurrent infections, nocturia, bladder pressure, and lower back pain for my GP to order a pelvic ultrasound.
To my surprise, the radiologist discovered diffuse adenomyosis and an enlarged uterus. Subsequent MRI scans confirmed diffuse adenomyosis and cysts and deep endometriosis with bladder and uterosacral ligament involvement.
While I wait for guidance from my gynaecologist, I'm pondering two questions I'd love to discuss with you all, if you don't mind:
1) Do you know how common is it for women with UCTD/SLE diagnosed to also have endometriosis/adenomyosis?
2) Does anyone in this group have both conditions and for those with both conditions, which was diagnosed first?
Hi Nala. I've always had issues with periods. I was diagnosed with endometriosis about 25 yrs ago well before i was diagnosed with SLE .i had 2 mini menopause treatments and 1 lot of lazer treatment.ive stayed on the pill to control bleeding.i did know about the connection but didn't join the dots until yrs later. I hope you get some help soon....its a miserable condition to have on its own never mind with anything else. Kind regards SML xx
Thank you very much for your reply Spanielmadlady I hope you are now feeling as well as possible.There has not been much progress in this regard, it seems to me.
I'm sure like many, we have always been told that our fatigue is fibromyalgia or chronic fatigue just because their markers show no activity. I have always said that there had to be something where my energy went.
It's a hard time because we are underestimated, we are made to see that what is happening to us is normal, that nothing is happening, and at the end of many years you discover that it is not so, that the immune system has been busy with other things. The brain and the immune system absorb most of the body's energy, and both diseases creates inflammation and have genes in common.
I wish that more consideration would be given to the problems that affect women and that we would get more quality multidisciplinary help.
When I was diagnosed the 90s little was understood about endometriosis. I was told having children would help......having 2 didn't. The role of hormones needs to be respected more and not used as an excuse . Big hug 🫂 x
I have read several articles making the link between endometriosis and SLE, some more tentative in their assertions than others.
I suffered from severe Endo, I had one major surgery and one laproscopy, part of ovary removed but adhesions on both ovaries and onto the bowel. Pain dominated my 20s and 30s. The hormone treatment, including periods of induced menopause, resulted in an early menopause - was peri -menopausal at 38 and periods stopped soon after. Couldn't take HRT as it re-triggered the Endo. My Aunt and her two daughters all had Endo but none suffer from UCTD or SLE but nevertheless have not enjoyed good heath, with other issues. The generation before us all however did, one sister with Lupus and the other with an undiagnosed autoimmune disease (With hindsight and knowledge she had all the symptoms but GP called her a hypochondriac), she sadly died of Pulmonary Fibrosis as did my aunt. So very complicated.
I was diagnosed with UCTD 2 years ago after an initial diagnosis of inflammatory arthritis. Ain't it grand!.
I hope you get some answers to your own problems soon, I remember the distress of Endo all too well. Keep reading and asking all those pesky little questions- it can make a vast difference to our outcomes and peace of mind. x
Thank you very much RosieA , I hope you are now feeling well or as well as possible. 🙏
1-Did you notice any relief or improvement after your hysterectomy?
2-Did you use any hormonal treatment first like the Mirena Coil or Evorel Sequi Patches?
I have read that many people have surgery but it is not definitive and can come back, also people who have not been infection free since the operation.
Having ligament, bladder and bowel involvement because I bleed and it hurts horrendously on periods (I was diagnosed IBS Diarrhoea in the past by the gastroenterologist without seeing/testing me).
3-All these adhesions in other organs or ligaments would need to be operated independently and by very qualified professionals who know very well the tissues they touch, right?
I am very inquisitive and I like to do a lot of research, that's why I drive doctors a bit crazy sometimes. 😅
I am going to be 47 years old very soon, I have always been fit and I have always try to exercise if I could, taken care of my diet, supplements but even so, I have lived the best years of my life exhausted and in pain, having to leave my job as an engineer because I could not take care of my family and continue my career like this, being more less than more, understood by my environment and even medical professionals.
4- At this point, do you think it is worth the hysterectomy as they recommend me or wait until the menopause might hopefully improve all this?
I know there are people who have not improved with the menopause, but maybe it is worth waiting and seeing and in the meantime trying Mirena again? It didn't work for me in the past ( without knowing I had endo and adeno) but perhaps it was due to my lack of patience as I was bleeding a lot.
Having profound endometriosis,diffuse and focal adenomyosis, with Raynaud's, low complement level ,SLE/UCTD. I am not sure what treatment could work. I plan to discuss all of this with the gyne and vasculitis team in my next appointment but your experiences (as we are all more or less in the same battle) is gold for me.
I am now in my early 60s. Although, I had part of my ovary removed it wasn't a hysterectomy. I had a very large chocolate cyst on it and the only way to remove it was to take part of the ovary with it. All the hormone treatment pushed me into early menopause and for me, although young, the pain abated and enabled me to get on with life. With hindsight, it was the best thing that could have happened. As far as medicine, HRT was not an option as it re-triggered the Endo, something to consider.
One thing is for sure, and that is that nothing is for sure. Your case is more complicated. You have to think of the potential benefits of a hysterectomy vs the negatives. If you are not worried about your fertility it has the potential to give you some relief. I am sure all the Drs involved will give excellent advice. I only know that I don't know how I would have coped with the Endo and UCTD (Lupus lite) at the same time. I certainly would, like yourself, been unable to hold down any employment. It is a very personal choice and one best made with those who have full knowledge and understanding of your case. No one can give you 100% reassurance but ask yourself what your aim is in seeking help - is it to be as pain free as possible, which I suspect it is, then weigh each option against that criteria.
Hope that helps a little. My thoughts are with you. x
Thank you again for your words RosieA , I really appreciate it.
In my case what weakens me the most is tiredness, fatigue, it is constant and nothing takes it away. I have tried everything. I push myself to do things even though I have it but sometimes I can't do it anymore, especially when it comes together with migraines with aura or with joint, muscle or bone pain as I say, because it seems to come from the bones.
I want to stop being tired all day long, yawning everywhere (although I am already known for that), but as long as the treatment does not generate other worse problems in the short or medium term.
It's complicated. I think it would help to use genetics more in our cases to know which pharmacological or nutritional treatments would benefit us more. Our body can't afford trial and error with all that it already carries.
The endometriosis formed cysts those cysts joined together at cyst stage endometriosis did form cancer yesterday ovarian endo cancer.
I had womb out both ovaries appendix cervix fatty later tummy and all lymph nodes from pelvic area to diaphragm.
Then chemotherapy 6 rounds last February to July
All clear now
I had genetics from my late mum who had different form ovarian cancer aggressive one in abdomen but fixed unable operate I believe she had endometriosis to undiagnosed.
Period issues since 15 and pain monthly until started menstruate age 15 half I'm 52
I've had lupus since mid teens ... now late 50s and also have Sjögrens and APS. Always had horrendous periods with heavy painful bleeds. Had appendectomy around 20 years ago and was told they found a lot of endometriosis. Nothing further mentioned or done. Suffered terrible bleeding and ferritin levels impossible to raise above close to 0. Had hysterectomy at age 47 - procedure took ages as uterus stuck to intestines and lots of chocolate cysts on ovaries ... all removed except for cervix left ... reason known only to the locum surgeon! No HRT offered due to APS/ lupus. Had no opportunity to speak with a doctor before or after the procedure ... I was just referred by a nurse practitioner. Horrendous experience. Feel better not having periods but have ibs probably aggravated by adhesions. No easy answers.
Sorry to hijack the post slightly, but are there specific symptoms of endometriosis affecting the bowel? I have bowel issues, but have had gynaecological issues for a long time too (some unresolved) and always wondering now whether all these things are connected in some way.
Definitely! My endometriosis causes ongoing bowel symptoms, including painful bowel movements and bleeding. I saw so many gastros who had no idea why I was experiencing bowel symptoms, because all my colonoscopies came back clear. Finally, I saw a fantastic gyno who diagnosed me in the space of about two minutes. What a difference it makes when you have the right specialist show up at the right time!
Thanks for the reply! I think I have some symptoms of endometriosis, but not sure they really fits with the gastro ones. I get symptoms at other times, not just during my period. I'm confused about my colonoscopy report, because at the time the department that did it said there was inflammation, granularity and ulcers around the rectal area (I think biopsy came back as non-specific inflammation, but not sure) & a very tortuous colon and recommended an "urgent" referral to Gastroenterology. Colonoscopy was about May/June, appointment with Gastro was end of November. At that appointment he told me they'd found nothing on the colonoscopy, it definitely wasn't anything and was just banging on about fibre... He said he would write back to the person who did the biopsies to check, which in the follow-up letter said something about "crypt distortion", but he confirmed there were no signs of anything like an IBD. It seems like the "crypt distortion" is associated with IBD 🤷♀️ Follow-up was supposed to be March, where I was going to tell them about the likely Lupus/Antiphospholipid diagnosis, then it was put back to April. April appointment was cancelled on the day and now put back to end of June!
So I'm still getting bloody/foul smelling mucus, stabbing left-sided abdominal pains that leave me unable to move, urgency with loose stool, extreme gurgling. Rheumatologist said she doesn't think it's part of the Lupus stuff, but I'm not sure - could be SIBO, could still be IBD as far as I can tell. It could be something I've not even thought of, but pretty sure it's not IBS. I had constipation my whole life until I was 42, then the symptoms I describe at the start of this paragraph began alongside the extreme Lupus symptoms. Coeliac blood test came back negative and I don't have the genes associated with it, so they've said it's "virtually impossible" for it to be that. I eat a gluten free diet (still with some "may contain" warnings, though) and it doesn't seem to help at the moment, but not stopping it as I don't want it to get even worse! I'm not getting pain below my ribs, to the left and sometimes central, but going by how dismissive they've been about the chest pain when breathing in and the gastro symptoms I can't be bothered contacting anyone about it.
Ugh, how messy! Sorry to hear about your symptoms, getting the run-around with appts and results, and the lack of clarity about the whole thing. Some of your symptoms could definitely be endo-related, not sure about the abdominal pains because mine are always lower-abdominal, but that’s not to say it couldn’t happen. Anything is possible! Let us know how you go, and I hope you get a helpful specialist soon.
Sure FredaN , if you have endometrial tissue in the bowel or inflammation in an area near the bowel. You may bleed from behind when you have your period, have painful bowel movements, gas, feel bowel obstruction, diarrhoea...that's why we are told we have IBS without looking any further.
There’s definitely a link between autoimmune disease and other chronic conditions. I have both lupus and endometriosis. I was diagnosed with endometriosis while being investigated for lupus—I’d lived with it for 19 years before a brilliant gyno finally worked it out! Eight years later I was diagnosed with lupus.
It seems there is a correlation between the two but not causation. Although it is widely accepted that lupus causes widespread inflammation throughout the body…who knows what this may indirectly produce…
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