The constant pain is making me so low - Pelvic Pain Suppo...

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The constant pain is making me so low

PenelopeClearwater profile image

I’m in the uk and suffering with chronic abdominal pain, following a loooong time with undiagnosed endo and a hysterectomy in 2019. The GP has supposedly tried everything and since I decided not to continue taking pregabalin, they have given up on me. I have a referral to the pain management clinic (assessment in 6 weeks), but the constant pain and exhaustion is making me so depressed. I can’t work, I can barely socialise, I can’t even think about having sex. I’m miserable and am getting very close to the brink of just giving up. I’m working with a therapist and taking antidepressants etc, but if the pain isn’t sorted, I really don’t know what I’ll do…

Can anyone else relate and do you have any suggestions? I can’t afford to go private and I don’t really know how to get anywhere with the NHS.

Xx

22 Replies

Hello again. I know exactly how you feel, I am feeling so down this week. I keep being told to have the grnh jabs or basically be quiet. I keep refusing them as I don’t want to swap one lot of issues for a different kind. I have a bladder prolapse, mass on left ovary, scar tissue and adhesions and now dr thinks May have endo on bowel due to symptoms. Already had so much surgery including hysterectomy and don’t know where to turn next. Everyone suggests private but it could run into tens of thousands to sort this lot out. Just keep crying and feel terrible. Like u say it interferes with your whole life. We have to try to get some positivity from somewhere but it’s so hard xxx

It’s so frustrating. But, it does always help to come here and at least know we’re not alone in it all xx

So true, can’t moan anywhere else as nobody gets it. I have a drs appt tomorrow so she can see basically up my back passage! Meant to have physio for scar tissue on Tuesday but I can’t bear the thought of her pushing on my tummy at the moment. I don’t know where to turn I really don’t. I may make a private appt with a gynae specialist just to talk thru where to start as it will be £190 for around 20 min appt as I just want to be listened to and advised where to start as it’s all ruining my life really and can’t see an end. Xx

Mrshappyme profile image
Mrshappyme in reply to EndoJaz

hello i know were you are coming from and i realy do feel for you . iv got hiatus hernia , iv had breast cancer 7 years ago and now i have bladder prolaspe and a uti infection due to the pressary ring i think .iv heard that you can get uti s. i keep having beating in back and under breastbone . blood peasuse gos up .im waiting on heart scan since may 10th still not heard anything . im sure it s got something to do with the prolase why i feel this beating and i feel like a beating throbing around my preassary ring area . doc s seem like they blame everything on angixty these days. i too have a cry now and than . have you tryed yes vm cream its helps me to feel compfy . whats grnh jabs ?

i take a probotic in the morning with my breast and one in the evening . every day and vitiman d3 .

EndoJaz profile image
EndoJaz in reply to Mrshappyme

Gosh you have had a lot going on too, it’s all just too much sometimes. The jabs are to shut your ovaries down and go thru temp induced menopause to help with endometriosis pain. Would give me a whole new set of problems so keep saying no to them. I am on ovestin cream for the prolapse. I had my physio today so knocked out on pain relief. It wasn’t too bad as I wouldn’t let her push too hard on my tummy and she didn’t do any internal work. I can’t have pessary ring due to having a hysterectomy, nowhere for it to sit. Try to stay upbeat, u have been thru a lot so I guess you are a very strong person xx

Mrshappyme profile image
Mrshappyme in reply to EndoJaz

hello im getting pain in my tummy and i keep telling my dr its paining me she says take omeprazole . which is not doing much for me .

I wonder if you are in so much pain that you should go to nearest a/e then a dr has to see you, may be a long wait, or if no transport call 111 and talk to someone, you shouldn’t sit and wait alone. I can’t even get through to a receptionist to get an appointment in e yorks, tho the eappointment form online is read and should get back to you by end of day, even if it’s only a telephone drs appt. so sorry

Use 111 or 999. Or just go to a and e. Use a taxi. I did. A and e have best pain management doctors and treatment. Busy but worth the wait.

nhs.uk/service-search/find-...

You don't need to ask your doctor just be registered with a gp.

meantime Samaritans are samaritans.org/how-we-can-h...

hi hun how's u doing today? I'm sorry to hear that ur suffering 🙁 unfortunately I feel ur pain 😔 please don't give up ur not alone in this and if you eva fancy a rant or a chat please msg me 😊 I hope you find something that helps you xxxx

Thank you, all. I really appreciate the replies 🥰

I didn’t realise I could go to A&E for it - I just assumed they would send me home?x

They might send you home. They do that here in Canada if you have chronic pain.

Hi, Penelope, I am so sorry you are going through this pain and for such a long time. I don't have the same problems that you do, I have prolapsed bladder and rectum. I have been dealing with this for a couple of years and finally went to my gyno. I have been dealing with horrible back and groin pain for some time. I know why you are so frustrated and ready to give up, the pain affects every part of your day and night. Please don't give up, we are all here for you and are hoping that they find a solution. Hugs

Penelope, I had no luck with NHS so when a friend recommended a private hospital for gyne problems I asked my GP to refer me there. BMI healthcare HOSPITALS accept GP referrals for NHS patients and any treatment/procedures/surgery you need, is paid for by the NHS and the waiting time to be seen is also much quicker. Read my last two posts and know, you are not alone.

Oh my goodness, you have been through so much! It makes me so angry and sad to see that there are so many of us with unanswered questions and terrible pain. All anyone does is throw painkillers at the problem and hope we go away.

I will speak to my GP and see if I can get a referral to a private hospital. Thank you x

Google BMI Healthcare, they have over 50 private Hospitals throughout the country and many of their specialist consultants run private and NHS clinics and do procedures in more than one hospital. Don't be alarmed when you read 'Ways to pay, in instalments or via your health insurance. I don't have insurance or loads of cash so I read a little further and it turns out, if they accept a referral from your NHS gp, the NHS will then cover all reasonable treatment/procedures costs incurred though if you order a bottle of champagne, they won't . Take a look, choose a hospital you can get to easily, click on that hospital and you can read all the consultants profiles. If I hadn't found and named the hospital I wanted, my GP would have just referred me to nearest NHS Hosp, so it's worth a try. Good luck.

Dear Penelope,Pregabalin in itself can increase depression and in fact can be extremely detrimental .

Just because you do not wish to take it anymore should mean they aren’t prepared to take care of you. Makes me angry. Pregabalin doubles the risk of people “giving up” . Show the GP the facts. They don’t even know themselves!

Take care, everyone is with you.

hi iv been having abdominal pain . and bowels arent working good at all , i also have uti infection . 3 lots of anitibiotics finish them this monday so next friday ill book in my dr and take asample get it checked see if its gone. and ask her what test i can have to check my obdomen . as i cant carry on like this pain in legs and feet from nerve tissuse i think with this bladder prolase.

melodious profile image
melodious in reply to Mrshappyme

Have you had any tests yet? Do you have a diagnosis of bladder prolapse?.

Mrshappyme profile image
Mrshappyme in reply to melodious

not yet still waiting i was diagnosis with prolaspe bladder last march had peressary ring fitted i had a few utis just finished antibioctic for a uti infection wich i thort i had for awhile now looking back . as i dont bun or sting with it but i knew i dident feel well .

hello i have pain in my abdemon although i have a hiatus hernia . i eat small meals breakfast i bran flakes with dried prunes and dark graps it and a drink of lemon juice in water. and a probotic that help alittle for me . and then in the afternoon around 1.30 i have 2 thin wholemeal slice of bread with tuni and a few graps on side of plate . and a drink of water then veg and chicken dinner or a fish dinner but i only eat fish 2 thimes a week as you can get merucry posioning. is your bowel s opening normal ?

Penelope, I am so sorry you having to go through this. I started with Pudendal nerve pain just over 3 months ago and I'm already at my wits end with the continual pain so my heart goes out to you. When it is at it's worst I just don't want to be here anymore but thankfully it does lessen after a while and with Oramorph to help me cope. My doctors and consultants seem to have no idea what it is even after many scans etc. I finally found this thing online and they have now put me onto Gabapentin. ( Ridiculous that I had to self diagnose, I felt like they just abandonded me) I'm told it takes about 3 weeks to kick in so as I'm a week in I'm hanging on in there. I have read that a particular cushion helps to sit on to relieve the pressure on the nerve so I am looking into that today. I am the same as you in many respects, I don't leave the house even to walk the dogs anymore unless I am having a low level pain day and even then I struggle. It is so debilitating. I do hope you can find help and relief from your pain somehow. I think knowing others are in the same or similar situation does help. It means you are not on your own. Hang in there Penelope. Sending a hug from a fellow sufferer.

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