Help, am I the only one??

[Painconstant]

I'm in constant pelvic pain without diagnosis. Iv had every test available and on paper I'm a perfect specimen of health. Iv been told by health professionals that it's all in my head. My GP tells me that I'll never get better. I'm at the end of my tether

[Cinderella18]

Welcome to this forum Painconstant, where you should get more understanding and support than you’ve most likely had anywhere else so far. Firstly, which specialists have you seen, apart from your GP to date? We can all understand what you’re going through.

[Painconstant in reply to Cinderella18]

Iv been to the gynecologist ended up having a hysterectomy. The report from the consultant said I'd had fibroids. The pain was gone for a while, replaced by a scar that took months to heal. But then the pain came back and is building. Gyny have washed their hands of me and won't give me another appointment. I now have gallstones and slight heart failure which is the GPs priority. Thanks for replying.

[bantam12 in reply to Painconstant]

It’s well known that many women suffer continued pelvic pain following hysterectomy and unfortunately there’s often no obvious reason or treatment. I had hysterectomy 6 months ago and my pain has returned which I was warned about, for me it’s caused by pelvic floor and vaginal atrophy which causes horrible pain, both are being treated and I can mostly manage. If you haven’t tried topical oestrogen it’s worth given it a go.

[Evonne02]

Hello Painconstant, I'm sorry to hear about your acute pains and non-existent diagnosis. I have acute hip pain, and it just came on suddenly around 7 years ago. Although I have arthritis all over my body, I instantly knew this was different. I've just been brushed aside, lied to, ignored, told it's my mental health, and told to accept it's my arthritis.

This pain, though, has dramatically reduced my mobility, my ability to exercise, my ability to stand, my hips response to a slight knock or pressure, etc. I can't even break even with housework as I have to choose 1 thing that I need to do, and that's it for the day. It's just not motivating me to want to keep trying anymore and has sapped my motivation to keep trying each day.

My hip swells, yet is cooler than the other hip. I can feel the joint slip in and out of the socket. The joint will ride/get stuck when coming out or going back into the socket. My hips will lock if I stand for over 20 minutes and leaves me in excruciating pain to try walking again. When I do walk I can go for a few minutes at a time then have to stop as it feels like my hip has turned into a spinning top that gets tighter and tighter with each step. I can't do steps anymore not gradients outside. Rather than help me, I've been placed into a Sheltered Housing with Extra Care which I hate as i used to run these places when i worked 😡😢

The older I get the more I stay home on my bed. Even sitting in a chair for long periods is a "No no" as it feels like my hip is very heavy, sore, swollen, and trying to go through the chair. Nothing i put under my hip helps as it feels like ive got a stone under it. This renders me back onto my bed.... usually angry at the pain, but mostly crying at the pain and zero help. If I try crossing my legs then the weight shifts to my left side, doesn't last long as my other hip can't sustain this position for long.

These days, although you can't see it, I've noticed that the swelling affects my clothing. In trousers, the swelling takes up the depth, width, and height of the trousers or skirt. You can not tell in dresses as i only wear Maxi dresses, if ever i will wear a dress. My clothes feel tighter and are not the look I'm after, or want to portray. Yes, I've even purchased larger sizes and the problem still exists.

The only help I've got from my gp is a blood test which stated that my inflammatory markers were higher...Obviously 🙄

I'm not sure what you can do to get help but I'm thinking of going to a walk-in centre, but I will try my gp just once more first. If those fail, I'll just call NHS111, then email my Mp as I'm not being productive at home and now struggle to look after myself.

I don't want to end up in a wheelchair but know that the walking stick i use isn't helping or aiding me at all anymore. I wish success in getting help. Please let us know how you get on. All the best 😍

[cafebomaes in reply to Evonne02]

hello, you have a fascial disorder so you should look for a physical therapist who knows how to do fascial manipulation and, even more importantly, who knows how to work with tecartherapy (look online). Believe me because I started in 2014 with these symptoms and only in 2020, February, I started to get better. Good luck.

[Evonne02 in reply to cafebomaes]

Thank you so much. At last I have a name for it. Omg, I can't express how thankful I am to you. Thanks again cafebomaes 😍

[sungirl55]

Do you have a tight pelvic floor? What are your pain symptoms? Do you have an anxious temperament? I started having pelvic muscle pain after a bout of UTI's due to vaginal atrophy. It caused me so much pain that I became terrified by it. That caused my pelvic floor muscles to tighten and "guard" my sensitive parts, causing even worse pain. I've had to learn how to calm my anxiety and not worry so much about my pain and my health. When I do that my pf muscles will relax more and it eases the pain. I also tried many treatments but nothing worked well. Calming my nervous system down has helped the most. Does any of this sound similar to what you're dealing with?

[cafebomaes in reply to sungirl55]

hello, you have a fascial disorder so you should look for a physical therapist who knows how to do fascial manipulation and, even more importantly, who knows how to work with tecartherapy (look online). Believe me because I started in 2014 with these symptoms and only in 2020, February, I started to get better. Good luck.

[GiraffeSquishmallow]

I’m so sorry to hear this it’s one of the hardest things when tests come back clear and you’re still in so much pain and doctors are inclined to blame any unexplained symptoms on anxiety. I want you to know that I hear you, I believe you, your pain is 100% valid even if you don’t have a diagnosis just yet. I know your pain is very real even if professionals haven’t managed to find a cause to explain your symptoms, it doesn’t mean it’s not real and it doesn’t necessarily mean it’s caused by anxiety although that’s possible, it might be the professionals haven’t looked in the right place for answers just yet.

I am also experiencing constant pelvic pain which we suspect to be caused by my bladder spasms due to Overactive Bladder Syndrome and bowel prolapse, awaiting further testing to make sure it’s not Painful Bladder Syndrome, Embedded UTIs or anything like that. Have you been to see any specialists like Gynae, Urogynae, Urology, Colorectal or Gastro to rule out bladder, uterus, bowel issues that could be causing the pain and to make sure you don’t have any kind of prolapse? It might also be worth exploring whether you have pelvic floor dysfunction e.g. weak pelvic floor or tight pelvic floor, which also indicates weakness of the pelvic floor or perhaps a condition like Vulvodynia. Does your pelvic pain accompany any other symptoms that could point towards a particular issue? Have they ruled out cysts, fibroids, adnexal masses, Endometriosis, Adenomyosis, Irritable Bowel Syndrome, Inflammatory Bowel conditions?

[Malachitegoose]

Endometriosis can only be ruled out via a laparoscopy.

I was told I didn't have it for years, though pain wasn't my initial main symptom. Heavy bleeding causing anaemia was the debilitating symptom I was experiencing. My pain has since increased though. I was only diagnosed because after trying all the medications they suggested and finding they either were ineffective or had unbearable side effects, I was offered thermal endometrial ablation (burning the womb to prevent heavy bleeding) and I requested sterilisation at the same time. As I have children and was around 40 they agreed, that procedure was completed laparoscopic ally and they found endometriosis. This was all before COVID.

Since then my pain and bowel issues have got progressively worse. I have been struggling to work for the last couple of years. I had some physio that was helpful and will keep requesting that again but they lost the funding for the specialist women's health physio. I have since had many ultrasounds, CT scans and an MRI none of which are able to show endometriosis, though now I have the diagnosis they think that the tethering they see between bowel and uterus us endometriosis adhesion and the enlarged uterus may be adenomyosis.

I knew nothing about endometriosis or adenomyosis before I was diagnosed. I am aware now that there is always a risk of developing neuropathic pain where the pain pathways just get used to firing all the time, so I focus on rest and relaxation when I have a pain flare. I spend time in nature as much as possible.

It's so wrong of them to just leave you with no diagnosis, even if it's neuropathic pain. You can request to be referred to the pain clinic for help but they won't accept the referral until the doctors have decided on a diagnosis and treatment for you.

[Painconstant in reply to Malachitegoose]

I've had every test twice over. Had a hysterectomy which identified and removed fibroids, which were never picked up even though I'd previously had a laparoscopy. The pain clinic is difficult to get to. I don't always have someone to take me. I've tried a lot of painkillers even anti depressants. But I find pregablin is best for dulling pain.It's good you have a diagnosis.

I now have slight heart failure which is taking priority. Oh god it's never ending.

Thanks for replying

[cafebomaes]

hello, you have a fascial disorder so you should look for a physical therapist who knows how to do fascial manipulation and, even more importantly, who knows how to work with tecartherapy (look online). Believe me because I started in 2014 with these symptoms and only in 2020, February, I started to get better. Good luck.