Writing an article about neuropathic pain for a medical school magazine - if anyone has any experiences they would be willing to share.

[aliceb]

Hello everyone!

I hope you are all having a good day. In short, I'm thinking of writing an article for my medical school magazine about neuropathic pain. This is circulated to a few hundred medical students and covers a wide range of medical and social issues and this issue has the theme of pain. I was wondering if any of you have been told that some of your endo pain is neuropathic and might be willing to talk about your experiences with it, which I might be able to quote for the article with your permission.

Even if you don't want me to quote you using your name or a pseudonym then any info from the patients' perspective would be really helpful. On the flip side, if you think writing about endo and specifically neuropathic pain wouldn't be helpful or useful let me know.

Thanks for any help (and for all your support these past few months dealing with my own pain and probable endo).

A

[jojo777]

Hi

It is true that there is neuropathic pain involved with endo. It is when endo is highly involved with nerves as I had deep infiltrating endo in my right uterosacral ligament where thousands or nerves are in the area.

I just had my 2nd lap 2 weeks ago and all endo was clear, but still in pain as nerves were cut and I'm in the healing process. The pain will continue until the point the nerves were cut will eventually heal. My gynaecologist told me since there is no endo at the moment there, the pain is 100% neurological and multivitamin supplements with vitamins B and niacin and gabapentin tablets will eventually help.

It is such a shame though, that even if we get rid of endo, sometimes the relief wont come straight away, so I guess I have to be patient.

Anything else you want to ask me, please let me know. I had only in one location endo, but it was deep and with so many nerves around, so I am a good example of what you are talking about!

Jo x

[missteal]

Sorry to be a numpty but explain neuropathic pain to me, is it nerve pain or psychological pain? What does nerve pain even feel like? This has never been discussed with me by a dr or anything and I'm interested lol x

[aliceb in reply to missteal]

Don't worry - it's not a commonly used term. Neuropathic pain is the pain that is left behind when there is no physical source (eg still being in pain after endo has been removed and they can't find anything else that would cause it). It means that the pain comes from the nerves themselves, and can be difficult to treat (they may use drugs that are normally used as antidepressants or anticonvulsants to treat it as these act on the nerves) and may need to be treated differently to 'physical' pain. It seems to be common in chronic pain conditions including endometriosis. As an (probable) endo patient and medical student I'm quite interested in the idea. A

[jojo777 in reply to missteal]

Hi

It is exactly what I described above. When endo is cleared sometimes if many nerves are involved then they leave the perception of pain. For me it's post op so hopefully it is going to go away eventually. No painkillers work hot water bottle works for me and patience too. x

[aliceb]

For people interested in neuropathic pain and endo, this blog ( livingwithendometriosis.org... ) has a copy of a scientific article written by a doctor in the Journal of Obstetrics and Gynaecology Research but it is relatively non-technical. If you scroll down, you should find a section on neuropathic pain and its role in endo. A

[Juleyanne]

I am 53 years old and have a long history of various surgeries over the last 15 years. Initially thought to be IBS and after numerous trips to Gp, investigations began. I had previously had an ectopic some 25 years previously and coil embedded itself in womb taken out via A & E plus endured a traumatic rape ordeal. What triggered my problems I am still unsure but years and years of pain and symptoms followed. I had both fallopian tubes removed in separate ops and

each time there was some relief followed by pain returning. One tube was apparently found to have endo within (scant mention in 3 line letter after op at the time!). In 2007 (Dec) I had a laparoscopy and hysteroscopy where extensive endo and adhesions found. Ovary had stuck to bowel and tube stump had stuck to bowel on the other side plus adhesions/endo around belly button (it had travelled to my stomach! Again relief was enormous afterwards but pain again crept back. Various trips to Gp and back to Gyne (having changed Gyne before lap and hysteroscopy), it was suggested pain was possibly due to muscular skeletal pain. At the same time a Bilateral Salpingo Oopherectomy was suggested if pain did not reduce with (at the time) impending menopause. The pain and symptoms involved mostly right sided pinching pain, worse when I sit or first thing in the morning pain always wakes me when bladder and bowel are full. Low back pain is a big issue, and general right sided hip/groin pain often travelling down from right hip to right knee. IBS type symptoms are extreme from constipation (worsened by Codeine type pain relief) and juggled with stool softeners and anti spasmodics like Merbervine, Colpermin, Fybogel (Co Drydamol for pain) sometimes I also have Lactalose and even a Senna when very constipated. Also, bouts of diarreoh occur and dashes to the bathroom unsuccessful! Frequent and problematic flatulence, regular internal and external piles. Recent CT scan also picked up Diverculitis Disease and Hiatus Hernia. I apparently also have a mid high receotole prolapse. Now in menopause, recent ultrasound appeared normal

(although ultrasounds notoriously miss adhesions/endo) they appear not to have located ovaries

which being menopausal are probably somewhat shrivelled or perhaps pulled up by adhesions behind other pelvic organs! Pinching pain constant, slightly improved when upright. Cannot bear tight waistbands and poor disturbed sleep an issue, despite sleeping tablets which help a bit.

Gps given me various anti depressants to try as although it is suspected adhesions together with Diverculitis Disease now causing pain - pinching right sided, hip and groin pain, low back pain and gnawing often burning stomach pain halfway between belly button towards inside my right hip

and burning round belly button occurs. Pain often makes me feel quite sick along with body stiffness and frequent need to urinate. Even eating I suppose due to Diverculitis Disease can add to my pain and discomfort. I have not got on well with anti depressants, amitrypline, does help me get a little bit longer in bed as I tend to wake very early due to pain and need to reduce the pinching and burning by visiting the toilet but although I have tried several, after a while they overwhelm me and as I drive I feel fearful of being not alert. Gps suggest referral back to specialist endo gyne

but intense fear of more invasive surgery and adhesions is stopping me. My gut feeling is although in menopause some form of nerve pain might be stemming from adhesions. As I am 8 months into menopause and menses has stopped my oestrogen levels should in theory be dropping and subsequently starving any endo left! However, even Gps agree that adhesions could remain a problem worsened by Divercultis Disease. I don't know if this helps re neuropathic pain but

this is my experience to date.

[Juleyanne]

PS fatigue also a big issue and general body stiffness and aching also.

[mixedspice]

I had horrendous nerve pain post op last October 2012. I called an emergency doctor who prescribed amytriptaline and codeine which helped to manage the pain. Fortunately I've not experienced pain like that again. I dodnt sleep for days and seriously thought I was loosing my mind and should have got medical help sooner. That was my lesson! I've never needed to call a doctor to my house before and it's an experience I wouldn't ever wish to repeat. The psychological impact of this was immense. I am lucky it was shortlived and have not experienced it since. Please get I touch if I can help further with your research.

[jojo777 in reply to mixedspice]

Hi did your pain actually eased with codeine? because usually these painkillers dont touch nerves and pain at all and thats my case too, i tried it and it didnt happen!

[mixedspice]

I was taking the codeine for the post op pain but it was the amytriptaline that sorted the nerve pain however, it made me feel v detached! It did the job!

[jojo777 in reply to mixedspice]

Thank you for the info, i will mention it to my gynae as i will see him in a few days.

Jo x

[aliceb]

Thanks everyone for all your input and stories! I'll let you know what happens with it. A

[Juleyanne]

Interesting about pain. I also take Codeine (Co Drydamol) for pain. Sometimes it takes the edge off my pain, others it does little but cause constipation. I have tried various anti depressants but they overwhelm me after a while and I drive so feel I need some brain cells working! Gps would no doubt frown on me but as a regular user of Zopiclone which I need to get some sleep before pain kicks in and wakes me. I have also experimented with taking half an Amitrytyline with the Zopiclone and it definitely helps. I am not sure if you are really supposed to take them together but as someone mentioned before Amitrytyline is better for nerve pain. I tried taking a whole Amitryptyline over a period of many days and after a few days I feel a bit 'strange' and unco-ordinated and that makes me more anxious. Plus if I ask Gp for more Amitryptyline I fear they will withdraw my Zopiclone. Zopiclone works for me for the majority of the time but when the pain is unbearable

I'll try anything! Along with stool softeners needed when taking Codeine I juggle with medication and symptoms. If anyone has experience or knowledge on taking Amitryptyline and whether it can be technically taken with sleeping pills or reasons it might not be advisable I'd be interested.

I only take an odd half from time to time although your supposed to take a set dose daily I do find it helps me sleep longer and dilutes the pain (any advice appreciated)!