Neuropathic symptoms? In excruciating pain and not being taken seriously

[Jaa64678]

Hello everyone,

A bit of background: I have been on a very long waiting list with the NHS to see gynacology, I finally got seen in November and I was told my symptoms were suspected endometriosis and I was put on the waiting list for a laparoscopy. I'm still waiting and haven't heard anything 11 weeks later.

Fast forward to now and I've had the worst week of my life, I started initially getting cramps in my ankle and foot whilst driving a few months ago and didn't think much of it, however at the start of the week my entire right leg gave up on me. My entire lower back, pelvis, right leg and foot became numb and I was in agony with nerve pain. I was referred to a&e and was seen by majors as they thought my nerves were compressed. I had an MRI and all results came back clear.

Coincidentally at the same time I started getting very dark (almost black) thick sticky discharge with what I assume is uterine tissue in it. I'm on the combined pill and take it back to back and only very occasionally get breakthrough bleeding or light brown discharge so this is new to me. The lymph nodes in my groin keep swelling up and going down every few hours and I have a searing pain in the bottom right of my abdomen and I can't sit down for very long without going numb. I also have swelling in my knees because I can't walk properly. My bladder constantly feels full but when I go to the toilet I have to push to urinate and even then it's not alot.

A&E cleared me and told me to go back to my gp. My GP can't figure out what is is, did an examination and ruled out uti's ect and said she'll contact me in a week. I'm on the typical strong co-codamol and naproxen but it's not doing anything, I don't understand how my GP can leave me in so much pain without any answers. I feel like they are just leaving me to deal with it by myself and that I'm not being listened to.

Basically my question is has anyone ever experienced symptoms of neuropathic pain like this in relation to Endo? Could it be possible that a lesion has ruptured? I'm in so much agony and can't take it anymore, I'd go to a&e but I don't want to waste their time and get dismissed again.

Any opinions or personal experiences would be much appreciated!xxx

[charlottecarter91]

Hi, I dont have an answer regarding your pain but I do know your not crazy !

I am 30 and was diagnosed with endo when I was 19. At 25 I was told it was stage 4 and I needed surgery as everything was stuck down. I waited until last year to have my big operation to 'remove' what they could. I am on my 5th month of zoladex 3.6mg implant following the op and have been prescribed amitriptyline for the pain.

I didnt know if it was endo related as I have always been told it wasnt but since my op the random leg neck shoulder and back pain have almost gone !

Please talk to your gp to discuss using amitriptyline every night to manage your pain and also zoladex every month to shrink the endo before you have surgery and following.

I have also always been told pregnancy can cure endo but whilst waiting for my surgery I naturally fell pregnant but ended up in hospital with big endo cysts on my ovaries which had to be operated on unfortunately the pregnancy did not last full term. I still think the pregnancy hormones fuelled the endo to cause the cysts but we will never know and everyone is different.

I wish you all the best and I know how mentally draining endo can be, your not alone and we are all here to support you.

[Jaa64678 in reply to charlottecarter91]

Thankyou for your reply! I've spoken to a doctor everyday this week and I just get the same response of them not being able to help me, I've tried amitriptyline before but it never helped unfortunately and I can't take certain medications because I'm on stimulants which will cause a bad interaction so I'm a little stuck! One of the doctors said my only option now whilst they wait to hear back from gynacology is if I'm in that much pain to go to urgent care and demand to be seen by the on call gynacology team. I really don't want to go to a&e but at the moment it's looking like my only option!

So thankful to have found this community, everyone is so supportive thankyou!xx

[Cailleach]

I think it is best to avoid A and E especially at the moment unless you get a sudden worsening of symptoms as they seem to be so busy and trying to keep people out of hospital. I certainly would keep on at your GP as this sounds horrendous. Ask if you can be referred back to Gynae to be seen ASAPI do hope you get some improvement. Your GP can certainly give you something for nerve pain, amitryptyline is the most common but there are others.

[Jaa64678 in reply to Cailleach]

I've spoken to a doctor everyday this week to try and chase things up, but now it's hit Friday and them closing it's going to be difficult to try and get any support which is frustrating. I've tried amitriptyline previously but it never worked for me unfortunately, and because I'm on stimulant medication I can't take most alternative medications because of the interactions. The gp said my only other option is to go to urgent care and demand to be seen by the in call gynacologist team, but I'm really bad at putting my foot down and and they didn't listen last time so I'm a bit stuck! Thankyou for your advice!

[TennisAM]

Sorry you're going through this. I can't comment regarding the neuropathy, but regarding the passing urine, have they referred you to urology? It's important they do an ultrasound to check if you're incomplete emptying/any other issues. Then, a referral for a cystoscopy to check the bladder and to see if you need your urethra dilated. Some women with a narrow urethra can find they struggle to pass urine in a normal way.

If you don't have a narrow urethra and you don't have incomplete emptying, you can practice bladder training, which really helps with reducing frequency.

It sounds like you need a referral to a neurologist to assess the other symptoms.

[Jaa64678 in reply to TennisAM]

I've had frequent urination for a few years now which gynacology said could be related to endo, but it's only the past few months that it feels like my bladder isn't fully emptying. My GP never mentioned seeing urology or a neurologist so it's definitely something I'll push for in the mean time, thank you for your advice!

[TennisAM in reply to Jaa64678]

You're welcome. My attitude, if you don't mind me sharing, has been to try to solve everything I can and let the surgery solve the rest (hopefully). So, when I was told my endo probably caused my issues, Urology did all the tests they could before the surgery. If it's something that can be solved without surgery, then great.

Take care, and you've got this! The GP will do everything you say.

[Tired73]

Request kidney scans to ensure you are not suffering with hydronephrosis due to endo lesions blocking your urethra. Also amitriptyline is a great help in coping with the neuropathic pain.