Night time pain

Is anyone else in severe pain at night?

I am in chronic pain on my right hand side (I think near my ileum and between my rectum and hip area) after lying down for more than 2 hours. The pain cannot be relieved until I stand up and move around. Strong painkillers don't work anymore and I am so tired and miserable having been told by my Gynae and GP that a hysterectomy would resolve my issues.

Has anyone had success with magnetic mattress toppers etc?

Any ideas welcome.

The pain is sometimes there during the day and accompanied by a limp if the night has been dreadful.

History

- Full hysterectomy in April severe recto vaginal endo, bowel tethering and adhesions found and supposedly treated. However, private consultant found nodules on exam last week and suspects deep endometriosis has been left behind. Private xrays and scans on hip to may sure not bones etc are all negative.

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  • Big big hugs XXX

    I'm seven weeks post op from extensive bowel shave and vaginal repair.

    I get no sleep as like you I get hip pain ( never a problem before I always slept on my left side) but if I lie on my back even with 2 cushions under my knees I get coxxyx pain and leg and foot tingling and aching.

    No drugs ever blocked it for me. It sort of builds over the day.

    I am definitely Endo clear though and it was a reputable BSGE specialist surgeon.

    It think it must be nerve pain due to post op inflammation in my case. What I find hard is I did not have pain before the op as a symptom. So I am worse now than before.

    I hope your new Consultant is able to help you....

  • Thanks Starry

    Always good to know someone else understands. I am considering making a formal complaint against the original consultant . I have had numerous sufferers tell me he should not have operated and now I find I he has left the disease behind I am very cross. It's easy to get cross when so tired.

  • If it was severe endo and bowel was affected he should have referred you on to a BSGE centre for specialist excision but an awful lot of general gynaes just aren't doing that.

    Have you got the NHS spec copy with the treatment pathway. Page 6 specifies referral from general gynae.

    google.co.uk/url?sa=t&sourc...

    I almost had the same thing happen to me but for getting the advice I did here.

    Thinking of you xxxx

  • Unfortunately, I couldn't get my lady GP (at same surgery as the older Male GP I am now seeing) to recognise my case as endometriosis. She didn't think I had a case for any Gynae complaint as the scans came back negative and pretty much stated that. I mentioned endo to her several times but had to push for a laparoscopy based on my fibroids and a cyst. I just didn't know about the protocol and the have-a-go attitude that seems to be rife and was just pleased the consultant would see me.

  • Have you requested the operation notes in writing ? You have a legal right to get a copy and presumably they should state Endo was found ?

  • No not yet. I am self employed and run a little business so as soon as I was well enough after the hysterectomy I had to try to get back to work. I am now struggling physically again and have decided to take a few hours off each day, so should have more time to follow it up. There's something up as the histology didn't mention any endometriosis according to the specialist, yet he can see severe endo in the photographs and on the brief notes.

    My main objective has been to get seen by a BSGE specialist (even after the horse has bolted) to have some sound advice on my condition, pain management and HRT. As both the Gynae consultant and GP seem to have very little up-to-date knowledge. I can then move forward positively. However, I might speak to someone legally this week as I am out of my depth and it doesn't feel right.

  • This was the consultants letter to GP:

    At laparoscopy she was found to have severe endometriosis involving tethering of the descending colon to the posterior part of the uterus and bilateral endometriotic nodules. She required ureterolysis to

    mobilise the ureters away from these, nodules on either side and perform the hysterectomy.

    The procedure was uncomplicated:

    Total laparoscopic hysterectomy and bilateral

    salpin ophorectomy and ureterolysis

    and division of rectovaginal adhesiolysis.

    sigmoidoscopy and methylene dye and she has had both ovaries, fallopian tubes, the uterus and cervix removed. I felt quite sorry for her when I did the laparoscopy in light of how long she has been having symptoms

    related to this condition.

  • So why doesn't the GP accept you have it?

    It's quite specific in the NHS contract you "will" be onward referred (p6)

    google.co.uk/url?sa=t&sourc...

  • He thought it was found during the hysterectomy and then dealt with with the removal of organs and would not bother me if I didn't take HRT. That's how ignorant he and the other GP I have seen at my surgery are. Ij their defenev they did have a letter to that effect fro the general gynae. It's taken me another 4 months and a private BSGE appointment to explain to him that the condition doesn't just disappear if the ovaries are removed. I now have a letter from the specialist stating that he can feel nodules very easily, so the general gynae didn't do a thorough job and the specialist is keen to get an MRI scan and possible further procedure. My GP has finally written an NHS referral 7 years after I first presented with endo, bowel symptoms. It might take 3 months for me to get into the system. My GP had not heard of BSGE clinics and if you read my comment below about his view on HRT and comments then you'll get an idea of how well my own research has gone down.

  • Hi

    I had full hysterectomy in Feb this this left ovary cyst was attached to my left kidney had been diagnosed with stage 4 endo year b4 first few months felt great however started getting pain in my lower back both side and stabbing pain above left hip been for ultrasound n blood test n told no endo however do have 6cm cyst on my left kidney n 2cm on right kidney awaiting to be referred to urologist however with the pain n severe fatigue I'm sure it's endo but doctors won't refer me bk to gynaecologist just a urologist but u know your own body but it's so hard getting them to listen in pain every nite and just want to cry if I try to move or roll over xx

  • That sounds terrible, it's awful to have been told this will fix it and then be much worse off. Your pain sounds very similar to mine. I am sure mine is endo around the small intestine and under my diaphram. I can feel it pull on my side in bed and then the whole area is tender until I am upright again. I expect it's just tender, sore and inflamed. My recto vaginal area is obviously still bothered by nodules and around the vault as the specialist was able to feel them very easily.

    The lack of knowledge amongst GP's and general Gynae consultants is shocking. I had to explain to my GP that the consultant's no HRT for a year to let the endo die off was nonsense. The specialist has noted gaps in my histology and hospital notes but can see severe endo on the images.

    My GP managed to squeeze three sexist remarks into his conversation with me this week.

    All relating to my desire to discuss HRT and his opinion that it is the worse thing to be introduced to MANkind, all from the male perspective.

    1. The falklands war started because of HRT (MT)

    2. A patient's husband phoned to rant that his holiday was ruined due to wife's HRT

    3. One of my reasons for discussing HRT, insomnia, sweats and total lack of sex drive - it was remarked that the latter must really impact on my husband and oh, me. The emphasis was on my husband.

    I am waiting for my NHS referral to be solidly in place and will then move surgery.

  • Hi ladies, have you tried printing out the NHS guidelines and taking them in with you when you see your gp, they have to follow these x

  • So sorry to hear all the pain you're in. I have similar pain but on my left side and it's worse during the night - mine is down to a large cyst detected a few weeks ago but I would hope since your surgery wasn't that long ago they would have removed that cyst completely...

    The GP referral system would be laughable if we weren't in so much pain. I have a written surgery report that states severe endometriosis found. I then had my ultrasound that stated large cyst suspected to be endometria and my GP still refused to refer me to a BSGE registered clinic. Guidelines or no guidelines they don't care to listen to the patient or to the bodies that govern them. My advice to you: find your nearest, most reputable BSGE clinic - there is an online database I can send you. Contact the clinic directly, via email, send them your surgery report and ask them to acknowledge that the report states you have endometriosis/makes strong case for suspected endometriosis and that you should be sent to a specialised clinic. Show those emails to your GP and if they still refuse to refer you report them to PALs for violating the guidelines on how to treat endometriosis.

    I know it's exhausting and the last thing you want to be doing is fighting to get he treatment you're entitled to, but you'll get there. Best of luck! X

  • Thanks Mary

    I did contact my local BSGE and made a private appointment. The specialist has written a strong letter to my GP requesting he take notice and refer me in as an NHS case as I need an MRI scan and possible treatment and insurance would not cover me as I have a long history of pelvic issues. He noted my histology and ntes were not as thorough as he would have liked, but confirmed severe recto vaginal endo on the images and he could still feel a nodule very easily in the embarassing way.

    As far as I know the letter is now with our local CCG waiting to be accepted.

    So, I've finally made it that far.

    I am then in limbo until I have the results of the MRI. I am just distraught as the more I know about the condition and my operation in April I am not confident the endometriosis was treated properly. I have significant bowel issues each day. Last night was one of the worse night Ive had in the last 3 years of pain, even prior to the hysterectomy. My operations is now 5 months ago and I am quite sure the pain isn't surgery related as it's so similar to the pains I had before the operation, just magnified some nights.

    I really appreciate all the replies.

    I hope your Cyst is treated swiftly.

  • It's horrible the hoops you have to jump through to make it this far and the waiting and not knowing causes more stress than anything I think. It feels like you're in a court of law having to present evidence and fight your corner - I'm amazed at your strength and determination after everything, including serious surgery.

    I'm with you on the lack of confidence. My surgeons didn't touch the endometriosis because like you it was localised on the bowels, so it's unsurprising to me that you're still suffering because I too don't think someone who isn't a specialist, in not only endometriosis, but cases of recto-vaginal endo would be able to treat you effectively.

    Have they prescribed you painkillers? It's definitely not a solution but if the waiting time is anything like mine you need something to manage the pain. I have been prescribed co-codamol but obviously all pain medication will prove ineffective after a certain period of time - the reason the doctors keep pushing that on me is for its constipation side effects, the bowel symptoms are excruciating and sometimes they dull that down.

    I have to say, if your surgery was 5 months ago maybe there is an endometrioma growth. I stopped taking the pill 6-7 months ago due to awful side effects and a 12cm cyst has managed to grow in that time. Hopefully the scans are scheduled in a timely manner and you'll have more answers soon. I know it's difficult but just know you are doing everything in your power to get better. Sending positive energy your way x

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