Constant low back, abdominal and pelvic pain!

[Aussienae]

3 minutes ago, cristiana said:

Hi Aussienae

I'm so glad I saw this as I'm not on the forum much at the moment due to work and family commitments.  I am in a bit of a rush so forgive me for not reading all this post if I am repeating anything but when I had pain return I noticed that I was overdoing the dairy somewhat and cut back and that helped.  Also worth checking if gluten is sneaking in, or if you have introduced a food-type that is perhaps causing the bloating.

In the past I have also had some othere tests when the pain has got bad - pelvic ultrasounds, a CA125 test on occasion, and colonoscopies just to be on the safe side.  

If the pain persists I'd say it's worth speaking to your GP to make sure you don't need any other tests.

I ought also to say that I have pain like that again more recently but I do think on this occasion it is to do with the fact that I have been doing a lot of lifting and I've injured my lower back, it seems to be coming from my hip and lower back rather than from the front so it is slightly different. 

I have said to various doctors in the past that as a women it is difficult to know where the pain is coming from and they've always agreed it's best to check for gynaecological issues for peace of mind. 

Hope this helps.

Cristiana

  

 

 

Thanks Cristina. 

I have made a doctors appointment but cant get on for about 4 weeks. Its so weird, I cant pinpoint why its come back. My last bloods were in December and my antibodies were normal, i am pretty strict with my diet. 

I had a pelvic ultrasound 12mths ago. Am thinking maybe i should request another. Like you said its so hard to tell where the pain is coming from. My lower back is definitely hurting but im not sure if thats causing the pain or there because of the pain if that makes sense... 

Gosh, i really do feel like all i do is complain all the time. This disease is hard work

[cristiana]

12 minutes ago, Aussienae said:

Thanks Cristina. 

I have made a doctors appointment but cant get on for about 4 weeks. Its so weird, I cant pinpoint why its come back. My last bloods were in December and my antibodies were normal, i am pretty strict with my diet. 

I had a pelvic ultrasound 12mths ago. Am thinking maybe i should request another. Like you said its so hard to tell where the pain is coming from. My lower back is definitely hurting but im not sure if thats causing the pain or there because of the pain if that makes sense... 

Gosh, i really do feel like all i do is complain all the time. This disease is hard work

I'm totally with you - hard work indeed! 

If you can book an u/s before your appointment, I'd probably go down that route even if I had to pay for it privately just to eliminate that.

However, one other thing I forgot to add - I suffer from a weird pain which one doctor has said is pudendal neuralgia (worth looking up) and another has said it is vulvodynia.   A chiropractor has also told me in the past that I have problems with my sacroiliac joint which, if you google, you can cause pain in the groin, lower back and even burning pain in the buttock and upper thigh. 

What I can tell you is that if I have constipation or bloating, it can kick off any or all of the above.  Mind you, so does hours spent at the driving wheel, leading me to also conclude that I have damaged my pelvic floor somehow, possibly by difficult childbirths.

I think for me that area is a bit of a war zone and the health system here in the UK tries its best but cannot find out definitively what is going on there.  I am a medical mystery!😕

 

[Aussienae]

1 hour ago, cristiana said:

I'm totally with you - hard work indeed! 

If you can book an u/s before your appointment, I'd probably go down that route even if I had to pay for it privately just to eliminate that.

However, one other thing I forgot to add - I suffer from a weird pain which one doctor has said is pudendal neuralgia (worth looking up) and another has said it is vulvodynia.   A chiropractor has also told me in the past that I have problems with my sacroiliac joint which, if you google, you can cause pain in the groin, lower back and even burning pain in the buttock and upper thigh. 

What I can tell you is that if I have constipation or bloating, it can kick off any or all of the above.  Mind you, so does hours spent at the driving wheel, leading me to also conclude that I have damaged my pelvic floor somehow, possibly by difficult childbirths.

I think for me that area is a bit of a war zone and the health system here in the UK tries its best but cannot find out definitively what is going on there.  I am a medical mystery!😕

 

Thanks again for your reply.

I do wonder if you are on to something. I have had a difficult childbirth, although it was 18 years ago. Interesting that it maybe related. 

I think i will definitely go with the u/s, just to rule out other issues. Its just so frustrating. Would be lovely to wake up and feel "normal" one day.....

[cristiana]

Worth the peace of mind to have that check, but chances are all will be well.  Incidentally, I've had pain on and off since my first child was born 18 years ago so I definitely think it is a factor. 

Mine comes and goes - at time it is so bad I just have to rest, other times it's scarcely there at all. 

Do follow through with your doctor, but also have a read of this - it just shows we are not alone, and it isn't necessarily all down to gluten - but of course, in some cases it might just be that!

https://www.ncbi.nlm.nih.gov/books/NBK554585/

[knitty kitty]

Nutritional deficiencies can play a part in pelvic pain...Since Celiac Disease can lead to nutritional deficiencies even on a gluten free diet, trial supplementation may be helpful.

"Nutritional deficiencies and metabolic disorders are not uncommon among women with MFPP but may be overlooked by medical practitioners as an underlying contributor to CPP. Deficiencies of vitamins B1, B6, and B12, folic acid, vitamin C and D, iron, magnesium and zinc have all been associated with chronic MTrPs (Dommerholt, Bron & Franssen 2006). In people with chronic MTrPs, 16% have insufficient B12 levels, while 90% lack proper vitamin D. Months of treatment may be required before levels become normal (Dommerholt et al.).

Recognizing Myofascial Pelvic Pain in the Female Patient with Chronic Pelvic Pain

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3492521/

 

And...changing your diet may help!

Dietary Patterns and Interventions to Alleviate Chronic Pain

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551034/

"Besides inflammation, low dietary intake of micronutrients, especially omega-3 fatty acids, vitamins B1, B3, B6, B12 and D, magnesium, zinc and β-carotene, is also associated with chronic neuropathic or inflammatory pain [13]. Supplementation of diet with these specific nutrients contributes to alleviation of CP..."

 

Vitamin B12 and Vitamin D help with chronic pain...

 

The Many Faces of Cobalamin (Vitamin B12) Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6543499/

And...

Vitamin D Status – A Clinical Review with Implications for the Pelvic Floor

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3691097/

When my pain flares, I increase my B12 and Vitamin D, adjust my diet and the pain usually goes away.  

Hope this helps!!!

[DALTE04]

You may be experiencing aches and pains associated with high dietary oxalates. Sounds crazy, but more common than you would think. Pelvic pain is a common issue with high oxalate consumption. My celiac symptoms showed up as peripheral neuropathy and in the course of my treatment, I determined that I had oxalate overload. My aunt had the same issue. It’s well worth looking into for everybody. Especially since we celiacs tend to overindulge in nut flours, which are super high in oxalates. 
 

Check out Sally K Norton’s website at https://sallyknorton.com and her book Toxic Superfoods on Amazon. 

[Scott Adams]

This is true, and we've also done some articles on the topic of oxalates:

https://www.celiac.com/search/?&q=oxalate&type=cms_records2&search_and_or=and&search_in=titles

[knitty kitty]

Thiamine Vitamin B 1 deficiency and Pyridoxine Vitamin B 6 deficiency can increase oxalate uptake.

Absorption of glyoxylate and oxalate in thiamine and pyridoxine deficient rat intestine

https://pubmed.ncbi.nlm.nih.gov/3947375/

"Dietary deficiency of thiamine or pyridoxine has been shown to produce hyperoxaluria and renal stone formation in man and experimental animals."

 

And don't take high doses of Vitamin C...

Vitamin C-induced oxalate nephropathy

https://pubmed.ncbi.nlm.nih.gov/21603151/

"Vitamin C is metabolized to oxalate."

 

[Wheatwacked]

I would be more concerned about low Thiamine, or too much supplemental calcium. A similar situation exists with vitamin D and cardiovascular calcification. The blame is placed on D, but the only cases cited seem to always involve supplementing Calcium along with vitamin D.

Quote

Calcium binds to the free fatty acids that cannot be absorbed. This reduces the normal calcium oxalate precipitation in the feces thereby allowing the absorption of soluble oxalate.  Vitamin C-Induced Oxalate Nephropathy

       American Bone Health  : There is increasing evidence that too much calcium from supplements is not good and can even be harmful. 

      Demystifying our inflated calcium intake recommendations   The problem is there much we do not completely understand and that conflicts with this picture. Whenever there is such discrepancies in recommendations, it is often because the science is unclear, special interest groups are influencing the process, or a combination of both. We have known for decades about the calcium paradox: Osteoporosis incidence as measured by hip fracture rates are higher in developed countries where calcium intake is higher.

     Calcium supplements: Good for the bone, bad for the heart? A systematic updated appraisal   Hulbert and colleagues show that calcium supplementation, but not dietary calcium, positively correlates with abdominal aorta calcification...      Calcium supplements rapidly increase circulating calcium and high levels of circulating calcium have been shown to increase cardiovascular risk; 

[ButWhatCanIEat]

Hi, I've had pain like this for years. It did get somewhat better after my late life Celiac dx and going gluten-free but still would flare up. After numerous doctor visits of various kinds we found out: I have a slipped disc; celiac related constipation and intestinal inflammation issues aggravate the back and make it all hurt far more than it would otherwise. In addition to gluten I have had to cut down/cut out caffeine, raw fruits and veg, dairy, most sugar and sugar alcohols.

[Aussienae]

6 minutes ago, ButWhatCanIEat said:

Hi, I've had pain like this for years. It did get somewhat better after my late life Celiac dx and going gluten-free but still would flare up. After numerous doctor visits of various kinds we found out: I have a slipped disc; celiac related constipation and intestinal inflammation issues aggravate the back and make it all hurt far more than it would otherwise. In addition to gluten I have had to cut down/cut out caffeine, raw fruits and veg, dairy, most sugar and sugar alcohols.

I did wonder if my back played a part in the pain. I do have slight disc degeneration and a bit of arthritis in my lower spine, this was found years before my coeliac diagnosis. 

My GI issues seem to be acting up too so it must all be related. Im just not sure why it would flare up now. My antibodies are at zero, so its not gluten causing the issue......

[Wheatwacked]

How are your vitamins?

bone pain could be vitamin D. Fat digestion Choline.

Most western diet have a very high omega 6:3 ratio. Like 20:1 while we should be as close to 1:1 as posible.  Omega 6 is inflammatory, omega 3 is healing.

For example sweet potatoes are supposed to be "healthier" than white potatoes. But sweet potatoes have a 17:1 ratio while white potatoes are closer to 4:1 and their vitamin and mineral profiles are not that much different.

Most of the creaks and pain will heal on GFD when you get all the essential vitamins.  There is also a connection between Celiac Disease genes and sacroiliac problems.

[Aussienae]

9 hours ago, Wheatwacked said:

How are your vitamins?

bone pain could be vitamin D. Fat digestion Choline.

Most western diet have a very high omega 6:3 ratio. Like 20:1 while we should be as close to 1:1 as posible.  Omega 6 is inflammatory, omega 3 is healing.

For example sweet potatoes are supposed to be "healthier" than white potatoes. But sweet potatoes have a 17:1 ratio while white potatoes are closer to 4:1 and their vitamin and mineral profiles are not that much different.

Most of the creaks and pain will heal on GFD when you get all the essential vitamins.  There is also a connection between Celiac Disease genes and sacroiliac problems.

Ive just started takimg my vit D again and am thinking about getting Omega 3....

[silverbirchu2]

On 5/25/2022 at 7:37 AM, Aussienae said:

I have spent endless hours researching and reading this forum. Thank you everyone for sharing your stories!

I was diagnosed in mid Feb 22 with positive blood. The hospital said to go gluten free asap as my levels were very high and did not need to be confirmed in biopsy. 

Im 3 months in and some things have cleared up, symptoms that I didnt even realise were related (sore feet and hands in the morning, dry mouth and eyes) but I have ongoing constant dull lower back and abdo pain, its so low its pretty much in my pelvis/groin (similar to menstrual pain) Weirdly its not there in morning when I get up but appears around mid day even if i dont eat. Its the same every day, although somedays it can be more painful to the point I take pain relief. I also have the feeling my bowel is full but I dont have C or D and am regular 

I take probiotics, digestive enzymes, B complex and magnesium. Ive had CT with contrast (last December) and more recently a pelvic ultrasound. Last blood test my Ferritin was slightly low and my CRP is always high. But all other tests normal, except for celiac of course.

Any suggestions???

Hi I had the blood rest but blood test only showed celiac when I had the biopsy a tube down my throat with a small knife and camera the results were wheat rye and barley allergy too  I get these pelvis pains my lower back pain was lumbago you might need the biopsy it's a long tube with small knife attached with small camera they cut a small piece of your lower intestine and camera takes a picture without this biopsy I'd be suffering still now ask the doctor about this they spray the back of the throat  your fully awake go straight home after sitting on chair 10mins it's very quick you won't feel a thing cause your throat is sprayed to numb the throat good luck 🙂 

[confusedandsick]

I’m medically recognized as gluten intolerant and I’m currently being tested for celiac disease. 
The back pain in particular resonates with me. At first, I thought it was because of my scoliosis. But then, it only really happened after I was exposed to gluten. I found out that this can be due to excess gas being stuck in the abdomen. It causes a lot of lower back pain, and sometimes pain on the right side of your lower abdomen. 
So no, you are definitely not alone here. 
I am not too sure about pelvic pain. As others above said, I’d say get an ultrasound. I experience a lot of pelvic pain but it is due to PCOS. 
I’m not too sure of the relief or causation so I will be reading through this thread. 

[EmilyKate]

On 6/11/2022 at 8:57 AM, cristiana said:

Hi Aussinae

I remember there were lots of unresolved issues for me at diagnosis - a recurring liver function test result which always worried my GP; tingling, buzzing and twitching; thinning hair; dizziness; bloating... there always seemed to be something going on.   A fellow coeliac on this forum @icelandgirl was in the same boat, we joked we ought to change our IDs/names to "Always Something"! 

Anyway, time did make most of these issues improve, but we're talking many months, sometimes a bit longer.  And in my case, weird stuff still comes back from time to time.  I thought I'd be joining this board for a little while for a bit of advice and reassurance,  and I am still here asking questions.

Now, don't be disheartened by this -  I say this to reassure you.  I was wondering at first if I had very serious neurological stuff going on, and even my doctor kept thinking there was some sort of blood cancer at first because of my dodgy blood tests.  But I'm still here, and occasionally get buzzing and tingling, and dodgy blood test results, but all of this whilst annoying hasn't come to anything.  I believe that really a lot of my issues have been to do with having undiagnosed coeliac disease for the first 45 years of my life, and the associated nutritional deficiencies and inflammation, and glutening incidents.

Some people bounce back, I know quite a few coeliacs in this situation.  You may well be one of them in a few weeks!  I remember going on holiday to Liguria, Italy once and our waitress shared she was a coeliac.  She looked healthy, had glowing skin, shiny hair, was athletically slim, was holding down a very busy, probably stressful job, and I looked at her and thought "Impossible!"  But there are lots of coeliacs who enjoy fantastic health once they get their diets straight.   I'd say of all the coeliacs I know here in the UK I've had the choppiest ride, most are doing really well now.

 So you may wish to give it a bit more time.  I think in your shoes, and having had all the very comprehensive tests you have had, I'd be fairly reassured. But if you wish to be proactive, you could approach a physio or chiro to see if the sacroiliac joint (or some other) is an issue.  You could go and have another chat with your gynaecologist to see if there is any other minor issue that might be causing your pain.  I did all of this, and kept thinking they had missed something, but eventually things did get better.

Try in the meantime to relax, take nice warm baths with Epsom salts, read a good book, do gentle exercise.  Enjoy the sun.  Try to get involved in interesting projects that will take your mind off things if you can because, if you are anything like me, I find focusing on symptoms sometimes makes the pain worse. 

And come back here any time if you need to chat. 

I am going to be absent from the forum a little over the summer, so please don't think I'm ignoring you if you don't hear back immediately. There are loads of lovely people here you can turn to if it all goes quiet!

Take care

C.

 

Hi Both,

 

I have stumbled across this discussion and I felt like I was literally reading my whole life. I just want to share my story as to be honest with you I feel completely lost, without answers and just hoping even by connecting with people that are experiencing the same things might help.

I am 30 years old from the UK, and was diagnosed with coeliac disease a year ago. It started when I went to donate blood my iron was low, so went to GP and coeliac was confirmed. I never really thought I had any symptoms and it was a bit of a shock but now I’m finding I am piecing things together.

I’ve had two c-sections and ever since I’d suffered with chronic lower back pain, never thought anything of it. However since being gluten-free for the year that seems to have alleviated all that. One positive outcome.

However, here’s the stumbling issues. For the last few years, again post babies, I’ve had terrible bloating, pain during sex, pain if driving/sitting for long periods. The general menstrual pains seemed to correlate with my cycle, so started thinking I might have endometriosis or something. Got referred for an ultrasound and at the time they believed my left ovary was stuck to my uterus, indicating endo. I was also starting to get the same pain on my right side. Long story short, I have literally had surgery yesterday to investigate, consultant assuming it was endo and they would just remove the tissue etc, and guess what… I woke up from surgery for them to say they found NOTHING wrong… everything looks completely healthy. Which for one is great news but I’m sat here thinking, I am not going crazy?! If my womb is fine why am I getting this pain when having sex, bloating etc. they’re wanting to start me on hormones to see if it helps but honestly when I read this forum I was just like “wait” is this actually all related to coeliac?

 

As well as all this suspected endo stuff this past year I’ve had other issues. I had an abnormal liver blood test that has been high both times so they sent me for a scan, shock, liver looks fine… so why is this test abnormal??

second, I have had a lot of fizzing and ache in my arms. Again went to the gp and got some physio stretches which has helped.

 

but honestly when I read your comments it was literally matching to pretty much what I’ve been going through and just completely agree with you when it’s like “always something”, I feel as if I am normal yet my body is telling me otherwise and after yesterday it’s just finally clicked that maybe this is all actually caused from coeliac disease and basically it is one giant pain in the ass!!

 

I’ve requested to speak to my GP to just discuss all this and especially about whether going on these hormones is actually the right thing to do,

but yeah I’d just be interested for any thoughts or further advice? I saw something about vitamins and things is there anything you’d recommend?

 

sorry for such a long response x

 

[cristiana]

Hello @EmilyKate and a big welcome to the forum!

I didn't want to read and run but I do have to run soon - taking an elderly relative to a hearing test!

But yes, it sounds like you are in the same boat. 

I'm so glad you've had the extensive testing to rule out gynae problems but I am not surprised that nothing was found.  I've recently had an MRI because of awful burning pain in pelvis - nothing found either!

I am sure I once read a statistic online (you may be able to find it) that stated, from memory, that one third of pelvic pain had no explanation. 

I've come to the conclusion that as women we have a lot of different organs in our lower abdomen/pelvis,  and of course the colon, so any pain/irritation or pressure coming from the colon can cause issues. 

It is worth looking into how the pudendal nerve can cause pain in this area (from things like extended time sitting, constipation, bike riding...) 

Sacroiliac joint issues, very prevalent in coeliacs, can cause pain in the lower back, lower abdomen, groin and thigh. 

The fizzing feeling in your arms could be nerve entrapment, but might also be tied to deficiencies?

As for your liver tests, can you share the results with the normal lab parameters, a lot of coeliacs on the forum have had that (I have too) and it could be helpful to know what your readings were.

Also, big question - how compliant are you with the diet?  If gluten is sneaking in, it could be a big contributing factor?

Some things to think about.

Cristiana

 

 

Edited January 10, 2024 by cristiana

[cristiana]

PS  If you are perimenopausal and getting vulvodynia type pain, repeated bouts of cystitis or anything along those lines in that area, you may find using Ovestin cream worth trying first before attempting to take systemic HRT.   I have a family history of breast cancer so am avoiding systemic HRT, but the small amount of Ovestin cream I've had to use has been a game changer.

[EmilyKate]

7 minutes ago, cristiana said:

Hello @EmilyKate and a big welcome to the forum!

I didn't want to read and run but I do have to run soon - taking an elderly relative to a hearing test!

But yes, it sounds like you are in the same boat. 

I'm so glad you've had the extensive testing to rule out gynae problems but I am not surprised that nothing was found.  I've recently had an MRI because of awful burning pain in pelvis - nothing found either!

I am sure I once read a statistic online (you may be able to find it) that stated, from memory, that one third of pelvic pain had no explanation. 

I've come to the conclusion that as women we have a lot of different organs in our lower abdomen/groin,  and of course the colon, so any pain/irritation or pressure coming from the colon can cause issues. 

It is worth looking into how the pudendal nerve can cause pain in this area (from things like extended time sitting, constipation, bike riding...) 

Sacroiliac joint issues, very prevalent in coeliacs, can cause pain in the lower back, lower abdomen, groin and thigh. 

The fizzing feeling in your arms could be nerve entrapment, but might also be tied to deficiencies?

As for your liver tests, can you share the results with the normal lab parameters, a lot of coeliacs on the forum have had that (I have too) and it could be helpful to know what your readings were.

Also, big question - how compliant are you with the diet?  If gluten is sneaking in, it could be a big contributing factor?

Some things to think about.

Cristiana

 

 

Hi Cristiana,

 

Thanks for responding so quickly. 
 

I will look into the predunal nerve stuff as I am often constipated too. I’ll also do some reading on the sacroiliac joints too.

I am wondering if I need to get a general food intolerance test just to see if I am sensitive to other foods.

In terms of my diet I eat everything gluten free. The only thing is I don’t use separate toasters etc in the family home, and also when products say “may contain traces of gluten” I was under the impression that they state that because it’s made in the same factory that handles gluten? I mean I bought a “gluten free goodfellas” pizza once and when I read the back that even said “may contain traces”.

But I am thinking that I should go completely off everything that may even have a trace, stop using the toaster etc but it does seem so extreme.

it’s just frustrating the limited knowledge GP’s have on the subject as I was just told to stop eating gluten and then have just taken advice from friends who have the disease also.

Do you take any supplements/vitamins at all? 

 

 

 

 

 

 

[EmilyKate]

10 minutes ago, cristiana said:

PS  If you are perimenopausal and getting vulvodynia type pain, repeated bouts of cystitis or anything along those lines in that area, you may find using Ovestin cream worth trying first before attempting to take systemic HRT.   I have a family history of breast cancer so am avoiding systemic HRT, but the small amount of Ovestin cream I've had to use has been a game changer.

Oh I’ve never even heard of that cream but I do get cystitis the odd time, so yes may try that thank you.

 

also in regards to my liver function, it was this level that was abnormal:

 

Serum alanine aminotransferase level - 45, normal scale is 0-34 so wasn’t off the chart high but still abnormal 

[cristiana]

5 minutes ago, EmilyKate said:

But I am thinking that I should go completely off everything that may even have a trace, stop using the toaster etc but it does seem extreme.

You must have your own toaster (or own toaster bags); for "may contain" read as "does contain", and try to avoid eating out for a while.   If small amounts of gluten are sneaking in, this will have knock-on effects and could be causing your constipation.  If you take constipation of out of the picture, you may find that your other symptoms settle down.  

Edited January 10, 2024 by cristiana

[Aussienae]

5 minutes ago, EmilyKate said:

Oh I’ve never even heard of that cream but I do get cystitis the odd time, so yes may try that thank you.

 

also in regards to my liver function, it was this level that was abnormal:

 

Serum alanine aminotransferase level - 45, normal scale is 0-34 so wasn’t off the chart high but still abnormal 

Hi EmilyKate

Its like a never ending story.....I do wonder how many of my symptoms are Coeliac and how many may be another autoimmune disease as my coeliac bloods are in normal range. 

Im waiting on results from a CT as my pain has once again returned. 

I had a couple of abnormal liver tests too, but it turned out it was a supplement i was taking! 

This pain seems to be more common than we are told and quite honestly I dont think even doctors understand it

All the best xx

[EmilyKate]

44 minutes ago, cristiana said:

You must have your own toaster (or own toaster bags); for "may contain" read as "does contain", and try to avoid eating out for a while.   If small amounts of gluten are sneaking in, this will have knock-on effects and could be causing your constipation.  If you take constipation of out of the picture, you may find that your other symptoms settle down.  

Ok I am going to do this for sure as at least a starting point, and let hope I see some improvements! Thank you for your advice x

25 minutes ago, Aussienae said:

Hi EmilyKate

Its like a never ending story.....I do wonder how many of my symptoms are Coeliac and how many may be another autoimmune disease as my coeliac bloods are in normal range. 

Im waiting on results from a CT as my pain has once again returned. 

I had a couple of abnormal liver tests too, but it turned out it was a supplement i was taking! 

This pain seems to be more common than we are told and quite honestly I dont think even doctors understand it

All the best xx

It really is isn’t it? And like you say I just think there’s still so limited understanding of it. I mean my consultant and all doctors I’ve come into contact with were made aware of it but have never even taken it into consideration, even when I’ve asked. It just doesn’t seem to be getting taken seriously enough.

where is your pain mainly? Is it in your pelvis/ovary area? Or back? Or both?

 

thanks x

[Aussienae]

1 hour ago, EmilyKate said:

Ok I am going to do this for sure as at least a starting point, and let hope I see some improvements! Thank you for your advice x

It really is isn’t it? And like you say I just think there’s still so limited understanding of it. I mean my consultant and all doctors I’ve come into contact with were made aware of it but have never even taken it into consideration, even when I’ve asked. It just doesn’t seem to be getting taken seriously enough.

where is your pain mainly? Is it in your pelvis/ovary area? Or back? Or both?

 

thanks x

My pain is lower back, pelvic and thigh. I have had literally ever test. Ultrasound, colonoscopy, endoscopy, swabs, blood tests....you name it. 

Sometimes its so bad i have to take pain relief, other times its bearly there....

[EmilyKate]

15 minutes ago, Aussienae said:

My pain is lower back, pelvic and thigh. I have had literally ever test. Ultrasound, colonoscopy, endoscopy, swabs, blood tests....you name it. 

Sometimes its so bad i have to take pain relief, other times its bearly there....

Oh gosh, well I hope you get answers soon! There really needs to be more information on it, but it is reassuring in some ways to know others are experiencing the same things and we’re not going crazy!