Pelvic Pain & Lupus

Hi,

Trying to determine the cause of long standing pelvic pain currently, and waiting for a second opinion after a laparoscopy didn't show anything. In the meantime I am doing some research into what other causes there could be.

I wonder whether anyone on here has been diagnosed with a condition (potentially related to lupus, fibromyalgia etc) which causes severe pelvic pain on a cyclical basis?

My pain is every 28 days, and is very sharp/severe. It can last 2-3 days with tenderness for a few days thereafter. I also get tenderness and slight pain around ovulation.

Any ideas for research would be appreciated.

Thank you

xx

15 Replies

oldest β€’ newest
  • Hello heather

    I think you're an experienced patient, so you'll know how complicated diagnosis in this part of the bod can be. I've been managing overlapping multisystem pelvic problems all my life. Some have been tackled & diagnosed because there was urgent need....others have been met by drs' blank stares, while I coped via lifestyle techniques 😏. Rheumatology mainly seems to want this investigated via referral to colleagues in other disciplines

    Which consultant are you seeing about this? Have any medics ordered any of these:

    Abdominal Ultra sound scan

    Abdominal/pelvic MRI

    thanks to my NHS surgeon urologist referring me to her Pelvic MultiDiscipline Team (PMDT) early this yeat, I've finally got a better understanding of the collection of conditions involved in my case of pelvic trouble (immune dysfunction + connective tissue conditions + various gyn, urological, colorectal, & gastro)...and especially the parts my versions of ehlers danlos & sojgrens play

    Am not sure how old you are, but in my years before menopause, my pelvic stuff did tend to flare in a cycle. For what it's worth, I have endometriosus, treated with the powerful prescription NSAID mefenamic acid 500mg...and this continues to help with pain similar to that you're describing. your laporoscopy found nothing, but how confident are you in the examining consultant...am glad you're getting a second opinion.

    The other angle your description brings to mind is gastro dysfunction due to the combined effects of your immune dysfunction & connective tissue disorder. My PMDT Womens Health Services Physio has helped me a lot to get my head around my version of this....and she has v efficiently & constructively referred me on to various PMDT consultants as necessary (the team includes uro-gynaecology, colorectal, gastro, urology etc). It's taken a year to go through the PMDT process....but the benefits are becoming clearer now. Am wondering whether you have a similar self referral system in your area: here we complete an application online to see WHS physios...if you get a senior physio with experience in immune dysfunction etc, this can help open doors to convincing diagnosis of the cause/s underlying the pelvic pain your experiencing

    Hope you'll let us know how this goes

    πŸ€πŸ€πŸ€πŸ€ coco

  • Hi Barnclown,

    Thank you for your ideas. It's such a complex world to work out sometimes. I'm not 100% confident in the surgeon so hopefully the second opinion will help. I am wondering if it's a combination of two things though, and what role the inflammation of lupus is having. Thank you for the ideas, as I will now have a look into these.

    I didn't know such a thing even existed.. Can I ask where you are based? I'm in Scotland and only 23 so not sure how that affects my options.

    Thanks again xx

  • So Glad if something in there can be useful. I think you're right: pelvic probs in patients like us are almost always multisystem ie involving overlapping disciplines & investigations & diagnoses & treatment plans

    I'm finding that MANY of us who are coping with complex pelvic issues have ehlers danlos hypermobility &/or sjogrens

    I'm in east Anglia. My instinct is that Scotland will have some sort of equivalent to my local NHS PMDT WHS physios, eg even in other parts of the U.K. the role of my local WHS physios seems to be covered by specialist gyn/uro/colorectal/gastro nurses.

    No matter what your age, you have a right to investigations + diagnosis + treatment

    Hoping you'll keep us posted

    πŸ€πŸ€πŸ€πŸ€ coco

  • Thank you. Can I ask in what way sjordens affects your pelvic pain? I have sjordens and hyper-mobility but not ehlers danlos?

    Thank you. I will keep you all posted xx

  • my understanding is that SS issues overlap with the connective tissue issues in vascular versions of ED hypermobility (& Dysautonomia) + the soft tissue autoinflammation of SLE (affecting our nervous, vascular, muscular, etc tissues) to cause a certain amount of trouble throughout the gastro system. in my case, and in the cases of others i know with my combo of diagnoses, this results in dysmotility & Dysautonomia from the mouth where food & drink go in, right through to where stuff comes out the other end (of course this includes urological & gyn systems). so, i have been diagnosed with chronic oral conditions, oesophagitis, gastritis, bacterial driven sepsis in the stomach, gastroporesis, inflammation of the duodenum, small bowel dymotility, IBS, EDS prolapses (early onset prolapsing heamorrhoids requiring full of heamorrhoidectomy in my early 30s, rectocyle) etc etc.... and i won't go into all my urological & gyn pelvic issues. and of course all this is going on in the peritoneum where lots of other abdominal/pelvic organs are trying to be funtional

    this website has gone a long way to helping me to understand all this:

    iffgd.org/

    other good resources and Wallace's great classic books:

    The Lupus Book

    The Sjogren's Book

    hope that makes sense to you

    XO

    PS I also have spondylosis affecting the full length of my spine...naturally this affects my abdomen/pelvic area too...and is factored in amongst the Scots causing pain & discomfort in that area...AND there are the sideffects of the meds in my multiple treatment plans, many of which feature side effects that interfere with abdo/pelvic function in ways that cause pain...& on & on

  • Hiya Heather,

    I am suffering the same type of problems at the moment and I too have Lup and Fibro, I also have a condition called Hughes Syndrome (mini blood clots). I took suffer the exact pain that you are talking about roughly about every 28 days, which only started a few months ago but I had to have a hysterectomy 18 years ago due to a condition called endometriosis but they kept my ovaries but my rumy consultant thinks that the condition might now have spread to other parts of my body causing the pain, so so far I have had my liver and kidneys scanned and I am awaiting an appointment to see a gyne consultant, and the results back from loads of blood tests to see if they can find my pain as it can be horrendous some days, I was scared stiff if was my liver or kidney on its way out, as I had to have my appendix and gallbladder out when I was 27 years old due to it bursting and the stones damages my liver for a while but my liver mended itself in time. So I understand your concern as the pain now seems to be right on my pelvic bone and to my right hand side especially where my ovaries are. I hope you get some answers and I will keep you informed if I get a diagnoses.

    Take Care

    Jane

  • Thank you Jane. I'm sorry they haven't got an answer yet but if it's endo coming back then I'm sure a laparoscopy will decide that for you.

    I'm not concerned about my kidneys or liver as my monthly tests just show slight scarring of my kidneys, and the pain is definitely lower than they are. I'm glad they've ruled them out though, and hope you get your answers soon

    All the best xx

  • Hi ladies,

    I too suffer with Chronic Pelvic pain and I've had about 5 laparoscopic procedures as well as internal and external scans but nothing whatsoever showed up.

    I wasn't believed by the doctors at the beginning nor by my place of work at the time, which then made me self harm to prove that something was wrong. I was refused a hysterectomy as I was too young but it did coincide with my periods each month. But since then I had severe bleeding whilst in hospital for pneumonia and they gave me a procedure called womb ablation, where they burn layers of the womb away and since then I haven't had a period.

    Fast forward a few years and since then I've been diagnosed with Lupus sle, sjogrens and osteoarthritis as well as underactive thyroid and depression and nothing else was ever done about my pain and I'm now on morphine for the pain. The pain is now being managed but it does still flare up if I've overdone things or been walking/standing for too long.

    But I'm now wondering whether to mention it to my nurse who I see for my knee injections, in case it could be arthritis in the pelvic bones. Has anyone thought about that ?

    Xxx

  • Thank you for sharing your story. I'm glad that the ablation helped somewhat but I definitely still want children and so this is not something I can consider.

    It might be worth mentioning to your consultant next time you see them, though in my experience so far they will most likely refer you on.

    All the best xx

  • Try removing gluten? I had 2 lap looking for cause of pain with no answers. I was in pain for 4 months straight but def worse at ovulation and period.. to the point I could not stand up straight without morphine. With no other options I went to a plant based whole food diet and the pain was gone in 2 days. Through process of elimination it was wheat causing the pain as it would come back if I ate more than a serving of bread and would last 36 hours til my body eliminated it. Neg for celiac and this problem comes and goes sometimes for a couple years at a time. For some reason the pain manifests in my ovaries but there's nothing wrong with my ovaries.. I'm currently in a period of about 2 years where it doesn't bother me but can randomly pop up aMD I eliminate wheat for a few days and the pain is gone. For me it is a very distinct pain in either side of my ovaries and do not correlate with cycle but definitely with wheat consumption.. weirdest thing ever and all my regular doctors think I'm nuts but naturopath seemed to think it made perfect sense and to just listen to body and avoid what bothers me

  • Thanks for the idea. I'm really glad you've been able to pin point the problem and deal with it. I personally don't really think wheat is my issue due to the cyclical nature of the pain but I am considering trying the endometriosis diet. If it helps the pain at all then it's a bonus :)

    All the best xx

  • That's really interesting Jill. I have Lupus and fibromyalgia, and pelvic pain is a real issue for me. I've had mri scans and abdominal scans and seen physios, chiropractors and a Bowen therapist with no significant result. I was trying to lose the extra half a stone steroids gave me an coincidently cut out most gluten products and noticed a difference in IBS symptoms, pelvic pain (a little) and headaches/migraines which are also a big issue for me. My test for coeliacs came back negative but gluten sensitivity can still be an issue. When I went back into bread my health deteriorated again so I'm going to try gluten free to test out if it helps. My pelvic pain does worsen alongside pmt but probably not as obviously as yours Heather. Good luck xx

  • Hi Heather, I have gotten severe abdominal pain at times and have found several things. One, I had cysts on my ovaries and second, my muscles tend to go into spasm (random, all over my body) for no apparent reason. My pelvic floor muscles were going to spasm and causing me to double over in pain. I also get joint/bone pain in my right hip. I went to physical therapy for my pelvic spasms and it works, it is rare now that it happens. I got my hips x-ray ed and it showed nothing. ??? So, I am not sure what or where your specific pain is coming from but first of you should see your primary care and see what he/she recommends.

  • Thank you SR. Did your cysts show on a scan? And how did you discover you were having muscle spasms?

    I've had a few ultrasound scans but by the time each appointment was organised the pain had gone, so I do wonder whether cysts play a part. It's strange to have them every month though.

    I'm glad the physical therapy helps. Is it a specialist or just a physio?

    Thanks and all the best xx

  • Well Heather, I had seen an OB/GYN and they did pelvic exam and and inner ultrasound and found the cysts. They were not cancer, just blood cysts and very painful especially when the burst. I went on a special dose of 'the pill' and they went away. Then yrs later, when I was off the birth control pills, they came back and we went back on the pill. Now, I have been off the pill for almost 2 yrs with no cysts. My cysts come and go, there are many kinds, I guess. As far as the muscle spams go...I called my primary care dr because I thought I was having a severe UTI. When I went to see him they gave me a urine test that was negative. So, he did a pelvic exam. This is going into detail, so be warned!! When he put his hand up into my vagina he looked surprised. Finished the exam and told me (by demonstrating) 'your pelvic floor muscle are like this' and made a tight fist. He said he had never seen such a spasm like that. I told him that I have been getting them all over my body, even on top of my head!! I could actually feel the muscles squeezing and releasing on my skull!! He recommended that I get Botox injections. Yes, he wanted to give me shots inside my vagina!! I was like Oh NO you are not!!! I said there has got to be something besides that or a pill PLEASE!!! So, I went and saw a special physical therapist at Women and Infants Hospital here in Rhode Island. I was also given flexeril that I take right at the onset of any spams. The flexeril doesn't do much and now I take Diazepam ONLY when needed. They don't like giving them out so I am very careful not to take them unless its really necessary. I do have Fibromylgia too, so that might be the problem, but they really don't know. I went to the Emergency Department at the hospital one night because my back was spasming so bad that I couldn't even walk and the dr told me that if you find out why some ppl get muscle spams you will be a very wealthy women because we really don't know. I know the more I stretch and keep limber the less spasms I get. I was told by another person to do Tia Chi or Yoga. I am looking into that as well.

You may also like...