Curious

[LauLau212]

I read a research article earlier that suggested a link between Endometriosis and Fibromyalgia.

I’ve also read articles previously about the relationship between spinal issues and fibromyalgia.

It had me pondering, specifically on the female reproductive side, how many women have endometriosis and have no idea they have it. It took me 9 years to be diagnosed and unfortunately, until recently, they had no diagnostic tool to diagnose it, except to go into the pelvic cavity surgically to see if there were lesions present.

Spinal issues I guess are similar, you can have bulging discs and pain etc for years on end. All of these issues creating internal pressures, inflammation, pain.

No wonder the central nervous system becomes ‘flooded’. It’s similar to a trauma response in that the stress hormone adrenaline will often put you in fight or flight mode consistently - until a time comes that you may suffer from adrenal fatigue.

I always say to people that I want to do this or that, but my body is screaming at me ‘no’ … almost like a broken machine that needs rest and oiling. Only we didn’t become so incapable due to outwardly physical burn out - more due to an internal combustion, if that makes sense.

What are your thoughts? Do you have any underlying issues like those above? Be interesting to hear from you meanwhile I’ll keep reading the research - it’s interesting to see what’s out there to try to understand things better and if there’s anything positive coming from the data xx

[Welshcatlady]

Good morning LauLau212 , I had Endometriosis for years when I was younger, constant appointments at the doctors because of the pain, being fobbed off with pain killers and "it happens when you have your period, you're just one of the unlucky ones who suffer so much pain." I conceived only once, and that ended in a miscarriage. After many years I was sent to a gynaecologist because of the heavy periods and the pain, a smear test found pre-cancerous cells, I was 34 at that time and in a bad relationship, so decided to have a hysterectomy. When they opened me up they found the endometriosis, so had to take one ovary as well as the womb. As you said there was no way to diagnose endometriosis then. In fact I'd never heard of it, at least now there is a lot more publicity about it.

I wasn't diagnosed with Fibromyalgia until 2018, when I was 64, but I had had symptoms for quite a few years. I don't know if there is a connection or not between the two.

[LauLau212 in reply to Welshcatlady]

I’m so sorry to hear of your loss in more ways than one. It sounds like you’ve had some pretty challenging experiences- sending love to you. It’s so tough when people have to go through multiple knocks and then to end up with this dreadful condition on top .. 😥 I wish you all the best and hope you have some support ♥️ xx

[Welshcatlady in reply to LauLau212]

Thank you very much, although I have Fibromyalgia and other chronic conditions, I have a much better life now than when I was in my twenties and thirties. I eventually left my first husband after many years of abuse, and not long afterwards met a wonderful man who is now my husband, we are both in our seventies and both of us have health issues, but we are both very happy and support each other.

[Dancerooni]

i have recently had a scan which has highlighted abnormal thickness of my womb, I now have an appointment for an endometrial biopsy, I also have fibromyalgia and long covid, I have always thought there is a link with these and gynaecology issues as I have always had worsened symptoms around the time of my period. I went in HRT to help, which it has in some ways.

[LauLau212 in reply to Dancerooni]

Thank you for your reply. I hope you get some answers and support. Interestingly, I also read a research article online yesterday evening that researchers are looking at the blood components as a possible cause of fibro too. Something to do with the way the blood and muscle’s interact - fibro patients were shown to have different blood make up (I believe it was more autoantibodies). In endometriosis, we bleed internally for a week every month and the body has to synthesise this. I wonder if this is increasing the symptoms drastically for a lot of women. X

[Fedupandtiredout]

Oh yes! I have had inoperable endometriosis and adenomyosis for 25 years, still suffering with it now, despite being post-menopausal. Ten years ago my spinal problems started: neck fusion and everlasting pain thereafter. Fibromyalgia diagnosed a couple of years ago. Not a surprise, given that I'd had 23 years of pain by then.

[Whiteclouds]

hello Layla’s, what you say is very interesting I had endometriosis from an early age it all started with very heavy painful periods then of course the pain in the lower abdomen which came and went y til eventually the pain was just constant making it difficult to walk. I was under a specialist who told me there was nothing wrong with me as all test came back normal. I was told I was a hysterical woman and to stop wasting the medical teams time. I begged this man to belief me that I was in the most dreadful pain but he poo poo me and told me to go away. I was 19 going on 20 years of age I suffered for almost 20 years taking strong pain killers until I finally went to the doctor and asked him for help. He referred me to another specialist I asked this specialist to open me up because all test had previously been returned normal Thankfully he believed me also I was taking so many painkillers there was concern I was overdosing myself just to carry on doing the basic of things. The operation was carried out I was told not only was my womb damaged but also my left ovary was covered in 4 chocolate cysts had they burst it could have killed me. Also endometriosis spores were all over my intestines and on the base of my stomach. A few years after this I had pain in my legs and lower back I tolerated this for many years as tests again came back that there was nothing wrong I was sent to physio but of course this only aggravated the condition I was finally sent to a rheumatologist a few years later and he told me I had a form of fibromyalgia he injected my hip area with hydrocortisone this helped for over a year. Now I have pain in my lower back pain shooting down both legs burning and what feels like the skin is being torn from my legs the first doctor told me there was nothing he could give me because I have SVT faulty heart circuit. I contacted the surgery again as I haven’t slept more than two hours a night for almost three months this other doc has put me in gabapentin I slept 8 hours so now I’m being referred to a specialist in the MSK immunoglobulin clinic next week , I hope that they can help me with the pain I. My legs which is making my leg muscles very weak. Sorry for the long winded I do on my fibro pain. Hope it helps.

[Giraffegreen]

Hi, I have endometriosis and I actually have a bulged disk as well. Recently I have been diagnosed with fibromyalgia and at the appointment I was told it goes hand in hand with endometriosis. It's almost to me anyway like my endometriosis and surgeries for it in a way caused the fibromyalgia. It was described to me in a way that suggested the body is on guard to pain and misinterperates signals. So one can naturally lead to the other

[Brigga]

I had endometriosis too. Only discovered when I had my hysterectomy due to fibroids and crippling pain. Finally they discovered the reason for my infertility when it was too late to do anything about it. I have suffered from migraines, back and leg pain since primary school. Doctors always said there was nothing wrong with me. My mum was forced to send me to school when I was unwell because I was missing too much school. Honestly my life has been constant pain but I’ve tried to make the best I can of it. Had to give up work a few years ago and got a fibromyalgia diagnosis. It’s so frustrating and boring constantly battling against your own body.

[LauLau212 in reply to Brigga]

I’m so sorry to read this, multiple levels of pain and trauma - sending love xx

[R-OD]

Hi I think lots of factors and/or illness can cause this, mine started with reactive arthritis so I know the exact date! 15/01/2017 in hospital two days later after going to my GP. I had regular visits to rheumatology when my consultant diagnosed FM after lockdown. Its good that research seems to be gaining momentum at the moment, hopefully there will be a cure or it least treatment to combat symptoms one day 🤗

[Twin4Life]

My sister's symptoms started a few months after she fell down the stairs. She landed on her coccyx, and bruised the bone. She also has a bone spur on one of her vertebrae near her tailbone, which may or may not have been created by the fall. It is displacing her ganglion impar (major nerve), which is NOT good. (We don't know when she got it, it may also have been caused by her scoliosis which is quite bad, but I suspect it was caused by the trauma of the fall.) These things caused her bad pain in her tailbone and eventually her pelvis. She also developed persistent sexual arousal. And, this pain and discomfort (as well as the anxiety and stress caused by not getting any help for it from the NHS) caused her to develop fibromyalgia symptoms.

My sister may have endometriosis, but we don't know. It took her GP 8 months to finally refer her to gyneacology, and now we have been told it will be a year before she hears about getting an appointment.

In short, my answer is yes, my sister does have underlying spinal issues that likely lead to her fibromyalgia. And, the NHS are to blame for her developing fibro. I believe had she been seen and treated/taken care of in a timely fashion and if her worries/concerns had been addressed, she would never have developed fibromyalgia.

[LauLau212 in reply to Twin4Life]

That is such a lot for her to be going through. I’m so sorry. You sound like a very supportive and loving sibling, that is a blessing. look after yourself too xx

[Dizzytwo in reply to Twin4Life]

Hi there, may I ask was your sister suffering with her health issues before you moved to the UK from the US.

I only ask because I wonder what kind of treatments and diagnosis she received in the US and have you discussed it with your GP.

Unfortunately our NHS is very over worked, under funded and under understaffed. So if all tests on your sister are coming back negative I'm not sure how the GP can treat something they are been told they can't find.

Maybe going private if you can afford it may be the way to go if your not happy with NHS or your GP services.