Back pain and tearful

[Donmk]

Hey ladies.... I've been suffering with more and more back pain as time goes on after 2 major surgeries. First surgery for endometriosis was November, followed by removal of ovary, fallopian tube and omentum in January.

The pain began as I began to get more mobile. I thought it was most likely because I have been so immobile for a long time, so tried steadily to build myself up again. I went for walks, I have tried swimming, stretching gently every day.

I have been to my GP, spoken to my consultant, spoken to my CNS..... but they don't have any answers, just pain relief advise.

I am now at the point where I am getting tearful with the pain. Standing up still is the worst pain. The only relief is a long lie down....which I can't do all the time.

I am officially back to work in a few weeks time. I can't stay off any longer as it's been almost 5 months already. I am dreading how I will cope. I am.going into the office this week also, just to 'catch up with the goings on '. I am a teacher and my job is so stressful and physical.

I have a GP appointment again on Tuesday am...... have any of you ladies had similar?

The pain is also in my groin area and radiates then around my whole abdomen.

I don't think it's nerve pain, as I've had that before and it doesn't feel the same.

I feel generally unwell.

Any advise?

[Mrs_Atko]

Hi there, gosh that does sound awful for you I'm wondering why your GP, Consultant and CNS aren't worried enough to investigate this ongoing pain for you...if it is so persistent, you'd think they would want to find out what's causing it. I'd be tempted to go back to whichever one of those health professionals you feel you have a good relationship with and discuss it further (and perhaps mention that you feel like this is being brushed off, when in fact, it's impacting heavily on your day-to-day living). In the meantime, it also sounds like you do not have adequate pain relief either, so i'd be wanting to speak to someone about that too as a matter of course, because there are plenty of ways they can manage this for you in the meantime, so you can at least go about your normal life (as best as possible).

Sending you a big virtual ((hug)) and hoping you get to the bottom of things quickly.

Jemima xx

[January-2016-UK]

Something isn't right. I don't see how you will be able to teach if you are in such pain when you have to stand up. I would ask your GP on Tuesday why she thinks you are suffering this pain as well as telling her that the pain medications are not working.

What about your surgeon? What does he/she think is the cause?

[Donmk in reply to January-2016-UK]

'Something isn't right' is the exact phrase I'm going to be using x

[Cropcrop]

I am so sorry you're in such pain and I ditto everything Jemima has said. I too don't understand why they're not trying to give you advice and proper pain relief. Speak again to your medical team and let them know how miserable it's all making you feel. Big big hugs and hope you get some relief very soon ❤xx Jane

[Donmk]

Thank you for your comments ladies. In terms of pain relief, I was taking ibuprofen when the pain started to get worse and dihydrocodeine when it's at its worst, but it makes me 'spacey' so not great. I don't like taking too many drugs so I tried stopping them. I took pain relief for a good few weeks after surgery but didn't want to just carry on taking them long term. So I haven't been consistently taking anything for the last five weeks or so.

The GP advised I take paracetamol continuously and the cocodamol when the pain increases. She advised a massage too, which I booked but they then cancelled, stating I must actually wait until at least three months after gyneoncologic surgery.

My CNS nurse just said follow what you GP thinks. I didn't get to speak to my oncologist but I did see my endometriosis consultant on Thursday.... he said I must try to build up my core perhaps, but how can I do that safely after this much surgery?

He also said perhaps it could be something to do with the way I may have been moved around during my surgery? He said it can be 'quite rough' during surgery.

I plan to push for follow up on Tuesday with GP. The pain is not constant, it definitely gets worse with movement though and I just cannot stay on my sofa the whole time doing nothing.

I appreciate your responses..... I think I'll have to accept taking pain killers long term until this is sorted.... would prefer to find out the cause though, rather than just treating the symtoms.

[Choski in reply to Donmk]

I picked up on the phrase 'quite rough' during surgery, that's what my consultant said as he was carrying out my flexible sigmoidoscopy in early Jan and he reported how twisted my intestines are now. "Blame your surgeon" he said (and he knows him).

I do now wonder how much care and attention is actually taken during (some of ) our operations - I know we have a lot of intestines and innards etc but it does make me think.......

Really hoping your pain cause is identified and greatly eased if not sorted.

Thinking of you

Clare xx

[Donmk in reply to Choski]

Thank you Clare, you are someone who I think about regularly. You are having it way tougher than me. I am in awe of your strength x

[Lupilindz in reply to Choski]

Same with me Clare, couldn't get very far as my bowel was everywhere. I'm in so much pain in my back groin area but waiting for scans again now, been waiting 10 days. How quick is fast track I wonder.

[Donmk in reply to Lupilindz]

When I saw my GP on Tuesday, she agreed with the consultant. She said if you saw how they move you around during surgery you'd be shocked. I'm taking pain relief and will just have to see how I get on. She thinks the pain in my groin is most likely referred pain.

I'm almost 10 weeks post 2nd surgery, my tummy feels like I've done 50 sit ups....it must be the muscles pulling back together?

This surgery is no minor incident. I have been into my office at school twice and I've already got sick with a heavy sinus cold....head ache, ears, throat.....little sleep last night and only just got dressed today! Immune system must be so low!

I wish you well with getting your pain sorted.... do they really need to be so rough with us during surgery?

[Purple-iris]

Hi

So sorry you are in so much pain and don't seem to be getting any answers . I definitely think you need to go back to your team and get them to investigate and support you further . But also remember you have had 2 major surgeries and think you mentioned the last one was only in January . If you are still in so much pain you should be able to talk to your GP about your return to work . I was a primary school teacher , had major radicle Surgery in Nov and finished my chemo in January and know I am not ready physically or mentally to go back to full time work yet . Would cause me so much stress that would make everything worse .

If they are suggesting you need to build up your strength /core have you been referred to a physio to help ?

As others have said they should be able to give you an effective plan for pain management . So difficult to concentrate on anything or even have a conversation when you are constantly in pain.

Sending you a big hug and hope you get some relief soon .

Love Kim x

[Donmk in reply to Purple-iris]

Thank you Kim, I did ask about physio but I think the GP thinks it will sort itself out with time.

I will push for more help on Tuesday. I wish I didn't have to go back to work yet but my full sick pay runs out and I just won't be able to manage financially if I stay home any longer. I had occupational health appointment recently and he's put the back pain in there and suggested I need a graduated return...50/60% to start with. If I can manage, I'll get full pay when there and half pay for the rest of the time. It's awful but the way it is.

I'm a secondary DT teacher. It's coursework hand in time and my HoD has already tasked me with assessing it all. I literally feelI'm going to crumble. I'm in tomorrow to have my risk assessment. Happy days.

You are right about physio I think....I'll ask again, it's clearly not getting better by itself x

[dryden1]

I am so sorry that you are in so much pain. Being in pain just effects even aspect of your life and I can understand how you must long for it to be sorted.The women have given great advice as ever. I have just a couple of suggestions should you be referee to a orthopaedic expert and or a pain clinic.. Chris

[Donmk in reply to dryden1]

Thank you.....I am going to push for a referral on Tuesday and I may ring my CNS again. My follow up scan is not until May x

[chrissapam]

hello, suggest you make more of a fuss than you think necessary...wish I had and will advise anyone in significant pain to do it....they can only think you are a bit overanxious, and you are entitled to be...especially if you are a teacher! love Chris xx

[Donmk in reply to chrissapam]

Thank you.... I will try and get something done other than just more tablets x

[Hidden]

Sorry you are unwell at the moment, certainly see your doctor and explain that you are not happy with the way you feel right now, Perhaps he can check by abdominal check up if there is a lump or scar tissue. Our bodies do take a lot of battering duringer surgery so most likely its surgery related but you need to get the pain under control

[Donmk in reply to Hidden]

Thank you, my endometriosis consultant felt my tummy and said no signs of swelling, I also did a urine test and no infection.

I have been giving it thought since he mentioned possible surgery related, which hadn't crossed my mind until he said....it started after my second recent surgery not really the one before, so could actually be the surgery itself.... it seems possible. Just how rough are they?!!

I just feel so frustrated, I feel I'm getting worse rather than better. I am sure people are tired of me 'not feeling well '..... I'm bored of myself!

[CallmeMum]

Hi lovely,

I'd go back and demand a CT scan as it sounds like there's more going on than 'wounds of surgery' etc. I do hope you get sorted soon and if you're not happy go and get a 2nd opinion.

Say to the consultant I want this or I want to be transferred and if you don't do either then I will complain to the General Medical Council that I'm not getting what I feel is the or appropriate care for me.

Xxx

[Donmk in reply to CallmeMum]

Thanks for your reply. I will try and get more help, I haven't been pushy as yet because I was thinking it would start to get better by now.

The doctor knows I am coming to discuss my back pain tomorrow....

There is actually a real possibility I have something called EDS. It's in my family and I have other symptoms. My back has never been this bad though so it's not been investigated fully..... perhaps nows the time.

Thanks again for replying x

[BJ_UK in reply to Donmk]

Hi, Donmk.

I have EDS too - type 3, hypermobility - what type is yours? I have struggled with core strength ever since my operation 5 and a half years ago, despite going to the gym regularly for 3 years and less regularly since (less time as I'm working as a volunteer library assistant 2-3 days a week), and I do wonder whether the EDS contributes to that. I was only officially diagnosed a few months ago, though a physiotherapist friend who worked with other patients with EDS has been telling me I had it for years. There is an Ehlers-Danlos forum in Health Unlocked, though I haven't used it much.

I have suffered abdominal pain to some degree ever since my operation. Both my surgeon and a specialist nurse who deals with people with adhesions say that this is what my problem is. As the nurse said, our guts don't like being handled, and they are handled a lot during our operations. Adhesions are our guts' way of reacting to this handling. I can't say that I have found any magic solution to this pain, but I have become better at ignoring it over the years.

I hope your doctor manages to come up with a solution to your pain, and I'll be interested to hear about it if he/she does!

All the best,

Barbara

[Donmk in reply to BJ_UK]

Hi Barbara, I am just back from the GP. She has told me it's still too early on in recovery to explore other issues. I am to keep taking pain relief, which in turn should help with mobility, which in turn again, should help to get more movement and build up strength.

We discussed EDS, but she doesn't know too much about it and there is no treatment other than perhaps physio.

I have joints that come out of place, lots of clicking, I also have bleeding joints. I get 'grinding' sensations sometimes in my leg/hip joints. I have reynards.

Anyway.....the verdict was... give myself more time to recover. Try pilates, gentle 15min swim and more pain relief.

I would like to join the EDS group....I'll take a look.

How did you make your diagnosis 'formal'. Is there a test? I read it's based on symptoms?

Donna x

[BJ_UK in reply to Donmk]

Hi. Donna. I saw a geneticist specialising in EDS who examined my joints and scars and took a medical history and family medical history. He said that there is not currently a DNA test for type 3, so that's basically all they have to go on.

Like you, I have several joints that subluxate easily. I don't have Raynaud's, but one of my sisters does. We're pretty sure that three of the four of us have EDS, as did our mother and her mother, not that any of them have been formally diagnosed. I think both of my daughters and my granddaughter are affected, as are my niece and her children. My niece has already been told that her kids are hypermobile - they are 5 and 3 years old.

Hope the extra pain relief helps!

Barbara

[Donmk in reply to BJ_UK]

Hi Barbara, my two nephews have been formally diagnosed, they are quite young. My sisters consultant thinks she has it too. I had never heard of it until she had her children diagnosed, she rang me and said 'I think I know what's wrong with you! '

I think my son is affected too, he's 12.

I have had multiple tests over the years for arthritis etc. Fibromyalgia was the last diagnosis I received, but I felt it didn't fit.

EDS is the first time I have felt that's it! So many issues which fit.

Re back pain.... I am back on pain relief which is at least allowing me to perform daily tasks but the pain is still ongoing, but I am controlling it at least x

[Bev155]

I had terrible back pain after finishing chemo. Was sent for X-rays and advised 'wear n tear' !! Was so bad couldn't walk longer than 10 mins without being in pain and had trouble wearing my cross body handbag.

But it all disappeared after a few months and am now fine.

Fingers crossed your pain will also go.

Xx

[Donmk in reply to Bev155]

Thanks.... I am hoping it will ease off over time too. Perhaps I will request an x ray, although I feel nothing is actually broken. I just don't know what they need to do really. I am going into work this morning for a risk assessment.... I'll just be honest about how things are at the moment and say hopefully it will improve...

[Neona]

I was fortunate in that a palliative care physio came to visit me after my op. I had the most terrible backache. She gave me some tiny exercises and they worked. I had to lie on my bed and breath in and then breath out as if blowing up a balloon inside my stomach. Then to breath in and , as I breathed out , to raise my arms all the way over my head, then breath out slowly and lower arms slowly. Then to raise knees, keeping one knee upright move the other knee away just a tiny amount as breath in and back as breath out. Don't let body roll at all. Repeat each exercise a few times 4 times a day.

[Donmk in reply to Neona]

Aw thanks....I will try that x

On a plus side, work were so lovely to me today. Very supportive and said they will follow my lead on building back up to full time. Just what I needed to hear.

[Neona in reply to Donmk]

You are very brave-I can't even think of going back to work-the chemo is all consuming.

[Donmk in reply to Neona]

I am not brave. I am just trying to get on as best I can. My tumor type is slow growing so chemo doesn't work. There can be no 'mopping up' only watching and waiting for further tumors.... which hopefully could then be removed surgically again. I am so sorry you're suffering chemo..... thanks for replying during your own struggles x