UPDATE: Well, it seems my suspicions were right, there is nothing wrong with my back to be giving me the pain!! Surprise, surprise, another fact I feel like shoving up the Registrars nose who told me I couldn't have Endo!! (Diagnostic lap showed Endo on both ovaries) and my back pain was an issue for Orthopaedics!
Saw a lovely lady, a Clinical Specialist Nurse of the Pain Management Team at my local Hospital. She spent over an hour with me and I felt really listened to and my pain understood. She went through my Lumbar Spine X-ray thoroughly with me, very interesting, where everything was fine apart from very early signs of Scoliosis, nothing at all to worry about but an early sign to start taking care of my back for later on in life. She has told me to go back to Gynae with this info - it was them that sent me.
It does seem that I have an issue purely due to the fact that I have been immobile for so long, this will be fine with a little physio and maybe swimming but she said I am in no fit state at the moment to contemplate that. I need to get my main pain diagnosed and sorted.
She has given me Gabapentin (on top of my cocktail of meds including morphine) to slowly build up the dose over 3 days then, after 5 days of full dose, give her a ring and tell her how many times I still needed morphine and my pain levels each day. She can then see if it is working and adjust dose accordingly.
Sooooo, more waiting. Have my post op appt. on the 18th and seems there will be much to talk about and discuss (what are my options with Endo on both ovaries, and WHAT IS wrong with my back). Have been told that I will not see a Registrar but Mr. Warren himself (!) who I wrote to after my distressing first appointment. Seems it was worth it.
Wishing you lovely ladies a warm, comfortable and pain free week as possible . xxx
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Thank you squidgy x It really is great to know that there is nothing wrong as coping with the Endo is enough as it is, let alone my daily back pain being another issue.
We certainly do need more of these "professionals" to be like the Nurse I saw, she , so patient, understanding and informative, she explained everything to me until I understood, amazing.
Thank you for your good wishes for the 18th. Cant wait. It is probably a good idea Mr. Warren (Head Gynae) has arranged to see me, because knowing my luck and the lottery of which registrar you will see, I would have got the one from my first appointment again. She was ill-informed of Endo (but still told me I wouldn't have it) and very dismissive, and I fear I would have wanted to shove my results up her nose. Sorry, but I was so upset after my first appointment, and if I hadn't written to Mr. Warren, I wouldn't have already had my lap and diagnosis by now. She gave me pills, (which I haven't needed because they were Mefanamic acid to take during your period, and I haven't had one since!!) and said come back in April (this was December). I was devastated. But now, I feel I am on the road (albeit still a rather long one) towards getting my life back.
Once again, thanks, take good care of you and hope everything for you is going much more smoothly and the "system" is treating you right.
I am glad u are not seeing the same registrar as before and hopefully this one (Mr Warren) will be more understanding and helpful. It is silly that we have to write and complain and fight to try and get heard! Once again all the best for this.
I am currently fighting the system as been refered to a gastroenterologist, who, to cut a long story short, said endo does not affect the bowels and u don't get pains at any other time of the month! yeh u can imagine my reaction and how I felt. And that what it is is IBS! He has booked me for a camera down throat and an MRI. I told him I had had this before and it showed nothing but he wouldn't listen. So once that is done (which will be in the next couple weeks) I will be writing a complaint letter about how he dismissed endo symptoms when research shows it does effect bowels and then I shall be going back to my useless GP's to ask for a referal to a gyno. Sorry I have gone on a bit there!
Best wishes and I hope things get sorted for you soon x
Thank you squidgy x Isn't it amazing how much more us Endo ladies know about this disease than so many doctors!! A letter may well be worth it, it's what I did, and had confirmation, in writing, among other things, that it its possible to have pain at other times during your cycle, not just during menstruation. Really do think that they should learn to "google" or join this site!!
If you need any suggestions for your letter, feel free to ask. I found it best to be non-confrontational, and ask for their "professional opinion" on the matters you wish to point out. I suggest you don't write to him, but someone above him, if you write direct to him he may dispose of the letter without anybody else's knowledge, or, feel "attacked" as we all would, and go into defence mode in his reply (if you got one).
Good luck with all that, and hang in there, you will get the treatment you deserve. Thanks again for your good wishes. xxx
Sorry late replying! Managed to get away to Norfolk for a week hol with my hubby but no internet at place staying! I was actually having a better week thankfully for that week which made a nice change..oh apart from an allergic reaction to some anti nausea medication..trout pout!
Unfortunately I am now feeling rubbish again! Nausea, upset stomach, abdo pains.
Have been stubborn and managed to get down to Poole to visit my family (Mum, dad, sis etc) as not seen them for 4 months now! Don't know how I've managed the journey to be honest and now I am here I feel rubbish! Kinda regret coming now although lovely to see them. Gotta try get back home on Sunday! Determined to as better to have your own surroundings when feeling bad I find.
One useful thing I found out being here though was due to being born with a tumour across liver, bowel, stomach my dad told me that after the second op the surgeons said some of my organs were stuck together but tried unstick what they could but still bits stuck! So that can't be helping me either!
Oh sorry I have ranted on! How are you doing? How did the appointment with Mr Warren go? Hope the Gapapentin is helping. Hugs x
I think I remember your post regarding this appointment and we have said that the possibility to be something else than endo irritating nerves in your lower back was very slim!
I'm glad its not something else on top of endo, gabapentin works for some people, but not for some others. Didnt work for me, as they didnt take the pain away and I was very drowsy and I couldnt concetrate at work and gained weight. Give it a try but if you think of stopping them do it gradually as they can cause withdrawal symptoms. (these pills were originally anti-epileptic pills and they are used in general for neurological pains).
Hi jojo x Yes, thank you for remembering, so sorry I haven't kept in touch, but, my pain has increasingly got worsen and found that if I wasn't in pain I was so knocked out from the cocktail of meds I am on that I was hardly capable of anything. Thank heaven for my Angel of a mum (ironically she is called Angela!) and my son for taking such good care of me, I am so lucky to have the support that so many ladies here don't.
Yes indeed, seems you were right with your advice, and I somehow knew deep down anyway that my back pain wasn't anything else. High Five!! lol So many of us here say "I know my own body," if only the Docs and Gynaes would even half listen.
Have been on the Gabapentin 4 days now, and like you, so far, it hasn't really made much difference to my pain, but, has given me some horrible side effects, trembling, heightened the "jerks" I get anyway from other meds, almost double vision and nausea. My instruction was to phone back the Nurse on Wednesday to let her know how I have been getting on, so, will see what she has to say then.
How have you been doing yourself? Am I right in thinking you were due an appointment when we last spoke. Also, how is YOUR back, any improvement there at all.
For now, take good care of you, and keep warm in this cold weather.
OMG, I can't believe you are going through something I did years ago. I am quite pleased to announce my kidneys, bowel, bladder, appendix and back are all fully functional and healthy - the reason I know this is that they (and many other systems and organs) were thoroughly checked in the years I was mis-diagnosed!
All I can say is, keep asking for help, make sure you find a solution. Mine was surprisingly simple after all those years, and to this day I wonder why my GP never once asked me about diet and endo to figure it out!?!
You will find a solution that suits you, make sure you ask all the questions you can and look for solutions that work with your body, rather than just cutting something out or masking the pain.
Thank you Lisa, sounds like you have also had a very distressing time, but at least you got a full MOT, lol.
Seriously though, it is ridiculous that us Endo Ladies know so much more than these so called "professionals". They should learn to "google" or join this site. It has been a god send for me, and although I get the impression some don't like that I am so well informed (well fairly) and know what I want to talk about and that I won't be fobbed off.
So glad for you that after all that, you had something easily dealt with (?) Do you suffer with any pain to this day, or discomfort, or issues from your Endo?
I have now also seen a Specialist Spine Consultant who has confirmed no issues with my back and will write to my Gynae to confirm this. HOpefully now they will take my daily, debilitating, lower back pain more seriously as a symptom of Endo. x
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