received in email from brother: . Your pelvic pain... - LUPUS UK

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received in email from brother

anbuma profile image
20 Replies

. Your pelvic pain isn't disabling as it would by now if it was being caused by OC developing over 2-3 years. People with sever pain cannot move and have to take high-levels of strong pain-killers.

I'm not saying you're not in pain, but just trying to view it on a scale of 1-10.

this is after told him on few occasions I can barely walk bend down or do housework cos of pelvic pain and pain releif doesn't help.cant take NSaids cos of allergy to them-cause stomach probs.

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anbuma profile image
anbuma
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20 Replies
MargaretGail profile image
MargaretGail

This seems to be a typical case of a man trying to be helpful and failing miserably. (Sorry guys) It depends on what your relationship is like as to whether you respond or not but if it were me and I don't have a brother but two sons I would tell him hiw much his ill considered words hurt. X

anbuma profile image
anbuma in reply to MargaretGail

hi Margaret

its not that great,were close a s kids -he is a year older than me -btu ha d nothign to do with him once he left home until he married and had kids.now live in same part of country(30minutes away tho he is in scotland and me in England)he does comeover and do stuff for me I cant do and does take me to appointments if he can .I have told him probs with gp btu he doesn't accept what I tell him always.dont tell him how much it hurts me btu do respond to his opinions

MargaretGail profile image
MargaretGail in reply to anbuma

He sounds like one of my sons, he cares but can't always show it.

kitkat74 profile image
kitkat74

Hi anbuma,

I also have the same thing but after 5yrs of using crutches and left side giving way when walking perhaps I may get some answers next month. So I understand where you're coming from, especially the family part.

I had a bursitis on my left hip, severe groin pain and top of thigh. Do you find it particularly painful when trying to carry a bag of shopping? Bending forward and when trying to walk as if something wants to snap? What about weight bearing and also is it just one or both sides? Do you know what it is yet? And why it happens? Sorry for all the questions I'm still trying to come to terms with all the illnesses!! Is there anything you do relieve the pain?

I can only hope we find answers soon cos it's miserable!! Sending you love and positive thoughts.

Kitkat74 xx

anbuma profile image
anbuma in reply to kitkat74

hello kitkat

yes i cannot carry shopping and get home deliveries-once a month fro heavy stuff ie dog food ,washing powder drinks etc and eventho I don't nee d much get a home delivery cos the thought of having to go out a second time is unbearable .only problem Is have to get more than i need to spend the £25 limit and £1 delivery charge.i only go itno town once a week at the most for anything else.i know people who go out every day shopping,could not do that.my ribs are protruding on left side and no gp has ere told me the cause and why more recently they are digging in me-prevents doing anyhtign that involves bending-housework ,tending to garden etc.i take paracetemol btu they dotn have much effect and only way to ease pain(pelvic )si to lie down btu i have =difficulty getting to and staying do get occasional twinges in my buttocks and pelvic pain spreads to groin area-disabling.dr said rib painis caused by hiatus hernia -diagnosed alst week-hwo can it be when that is in the centre of abdomen/chest area .no treatment fro gastritis or duodenitis.thnak you for your kind words

kitkat74 profile image
kitkat74 in reply to anbuma

anbuma,

My heart goes out to you. I make myself go out because I live alone and get try to keep active but lifting my mobility scooter also doesn't help.

When I describe my issues to the past rheumatologist they just stared right through me as if making symptoms up.

All I can say is keep your head up and I'm here if you just want a chat. Any information I get I will pass onto you.

Love Kitkat xx

anbuma profile image
anbuma in reply to kitkat74

thank you kitkat.get so frustrated at times when I think 10 years ago i used to walk my dog .walk into town tend to my garden do decorating now can barely do anything for very long if at all.

Jora profile image
Jora

Poor you. That certainly doesn't help. I know it's easier said than done when applied to family, but could you try telling yourself that " those who mind don't matter, and those who matter don't mind". He clearly has a problem with your illness, but that is HIS problem.

notoverthehill profile image
notoverthehill

I also had chronic hip pain which was caused by artery blockage to pelvis area I had an operation lst friday to open up both iliac arteries and stents fitted and it was like magic Pain has gone ! had assumed that my problem was from hip joint not blood supply to my pelvis.I know how you feel when people just dont believe how bad the pain can get .Think about other reasons for the pain not the obvious ones

anbuma profile image
anbuma in reply to notoverthehill

have had few ops in the last few years-one to remove a polyp and the op to rectify weakness in pelvic floor muscles-provide support.so it could be to do with oen of those and gallbladder removal.my gp is "waitign" to speak to gynae when he attends the surgery-been several weeks and he claims the gynae hasn't been there. yet.i don't get why he wont refer me -proves not takign me seriously,back to A&E?if there are so many possible reasons why is he not considering them?

onamission profile image
onamission

I get a lot of hip pain I have a labial tear to my right hip and every time I walk I get a shooting pain in my groin I slipped and ended up doing the splits. I find it difficult to sit on the loo and I can't lie on my right side I'm back on morphine 12 hour release tablets 2 per day it does take the edge off and then I top up with syndoll they are a codeine and caffeine mix but being in constant pain drags you down it took them 2 years to find out why I was in so much pain with my hip and now they can't do anything makes me mad

in reply to onamission

Hi onamission, have they not discussed the possibility of doing an arthroscopy to repair the tear? I had years of hip pain after a fall and finally was operated on 12 months ago and despite the surgical pain, I had instant relief from the hip ache and shooting groin pains. Unfortunately my hip partially dislocates so a couple of moths later it gave way again and I've torn it even more now...but they've found a bony spur on the hip which catches on the labrum and re-tears it every time I move so when they go back in they will smooth that off as well as repair the tear. Have they looked for anything like that with you? X

onamission profile image
onamission

I went to Oswestry orthopaedic hospital they told me the only thing that would work would be a total hip replacement and I'm to young. It is painful but I did mine when I slipped on petrol about 3 years ago and ended up doing the splits what makes matters worse I have lower back problems so its not good

in reply to onamission

Hi, I will need a double hip replacement, but I'm only 37 and since they'd have to be replaced every 10 years, for now I have arthroscopies to repair the damage as it happens. It's definitely worth asking about. Similarly steroid injection into the affected hip can ease your pain for a couple of months in the interim. I'm having this done next week, with the arthroscopy probably at the end of the summer. I too have dreadful back problems, but much of it is referred pain from the hip as the body tries to guard the injured joint with the surrounding muscles. When I had my surgery last year my back pain was 70% less afterwards, until I tore the cartilage again at which point the back pain returned with a vengeance. Whereabouts in the country are you? There are some really good experts that use this new type of soft touch surgery that is minimally invasive but can completely repair a tear in half an hour xx

Wendy39 profile image
Wendy39

Hello. Just reading this thread and thought I would reply, as I had a laberal tear to my left hip. It had torn right through and was very painful. Leading up to the op, the pain was unbearable and I could hardly walk at times. It had been caused by growths on my femural head - the ball of the socket. I had a key hole procedure in April last year, to re-shape the ball of the socket and repair the tear. It worked! I still have advanced osteoarthritis for my age (39) to contend with and know I will need a hip replacement on both sides a lot earlier than some people but the op will delay that a little and has given me quality of life back. The procedure is called a hip arthroscopy. Find out if it's done in any hospitals in your area. Good luck!

in reply to Wendy39

Hi Wendy, this is really good to hear! I'm having this done in a few months. Last year a different surgeon just found the tear and fixed it but never looked at the bone. This time, a new surgeon with a different type of scan and way more thorough found cam abnormalities and bone spurs so he will smooth the bone and repair the cartilage so hopefully it won't happen again! X

onamission profile image
onamission in reply to Wendy39

Hi Jigsawcat I have had in the injection in the hip under live x-ray it did not work I had the dye injection MRI scan and I go to Agnes Jones and Robert Hunt hospital at Oswestry its supposed to be the best in the country. I did the splits which caused mine and have been in pain for 4 years now they say I will need a hip replacement this is the only thing that will stop the pain.

anbuma profile image
anbuma

so could my pelvic pain be from a hip problem?dont have too much pain in my hips-odd twinges.

in reply to anbuma

Hi, if you had a hip problem you would have a lot of pain in the hips. Aching, muscle spasms and sharp stabbing pains in the groin that stop you in your tracks. notoverthehill had hip pain that turned out to be from her pelvis, not pelvic pain that turned out to be a problem with her hips. Didn't your doctor mention that it could be a problem with the mesh from your bladder surgery? My mum needed that surgery but refused to have it done as she had at least 3 friends who ended up with excruciating and disabling pelvic pain because of the mesh with got dislodged somehow. They wished they'd never had the operation! I'd definitely keep pushing to see that gynaecologist x

anbuma profile image
anbuma

hi ,I don't know what it is causing it but I am unable to walk up any incline-unless i have my dogs to do so.it usually means a detour to avoid steps and hills.whether it is the pelvic pain and ribs or .having hiatus hernia,gastritis and duodenitis. I asked my gp if it could be to do with the mesh.it seemd the right thing at the time -not having to put up with incontinence and it was the only solution.have contacted MP to see if he can help get me the referrals I need.

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