endo Pain

[Shuggy11]

I’m 53 and, after nearly 30 years of pain, I was diagnosed by telephone by an unnamed consultant that I had endometriosis and it was within my muscle to the left of my left ovary. I have received no advice, support or treatment since that diagnosis 3 years ago. The pain had now grown and is under my rib cage, my lower left back and down my leg, affecting my mobility. I had my last period 5 years ago. I have been prescribed amitryptaline (which leaves me zombie like and unable to function) and various types of pain meds including diclofenic, naproxen and codeine. None of them provide complete relief with codeine being most effective. My doctor refuses to see me face to face, prescribe codeine or even refer me elsewhere. Any advice on what I should do? What pain meds work best for you?

[huhfimmie]

Hi, I'm so sorry to hear what you're going through that sounds awful. Were you diagnosed via laparoscopy and was the endometriosis removed? It sounds very weird to me they didn't follow up with your care. I'd suggest getting in contact with another endometriosis specialist and explain your situation to them, as there is a possibility the endo could've regrown if you did have it removed originally, or you could've developed neuropathic pain (which is what I have because of being in pain from endo for so long).

In the mean time it is worth seeing if you can get a referral (from your GP) to an NHS pain clinic, which is a clinic that helps people manage chronic pain conditions like endo. I've just started one and already have found it so validating talking to professionals who understand endo and getting helpful advice on breathing techniques to manage stress (and stress makes endo symptoms worse) by stimulating the vagus nerve, and even different sitting positions to relax the pelvis.

Also, when you see an endo specialist you could suggest taking dienogest if they don't, which is a pill that helps prevent the regrowth of endometriosis. I've been on it continuously without breaks for 6 months since my surgery and my periods have stopped too because of it.

My medication is a bit all over the place at the moment but at night I put on 5% lidocaine medicated patches for 12 hours and take them off in the morning and found that has helped my pain. I also take some codeine and diclofenac like you but found codeine most effective. To help with mobility you could get a walking stick, no shame in that at all. I also like having an electric blanket on at night for lower back and leg pain, as well as drinking ginger tea a lot to help with nausea.

Is the doctor refusing to refer you your local GP? If so, you can request to see another GP (maybe see if there's one with a specific interest in women's health), but it's very important to keep fighting for the treatment you deserve, I know how exhausting that can be though. Please let me know if I can help with anything else at all, I'll be thinking of you! 💕

[Shuggy11 in reply to huhfimmie]

thanks for this. It makes me feel less insane. I’ve not been able to see a doctor in person since before lockdown and any telephone consultation is quick, and I don’t feel heard. My GP just keeps saying here’s a new pain killer and let’s see how you get on with it, phone back in 2 weeks. Of course the 2 weeks turns into 3 or 4 because I can’t get an appointment. I don’t think they understand or believe the severity of pain I’m in or that it is effecting my mobility. However, on your advice, I called the surgery back and insisted I at least speak to someone. The practice nurse called and she listened to me, believed me. I cried! She has referred me back to gynaecology as well as for physiotherapy. This has taken me nearly 3 years, thank you so much. I’m still in pain, I still can hardly walk but feel a million times better today.

[huhfimmie in reply to Shuggy11]

I'm so so happy to hear that you were finally listened to, wishing you all the best x

[Channy3]

My advice to you hun is change doctors asap, I’m sorry you appear to have a doctor that doesn’t care about your health as he should. U need and deserve the correct treatment to improve your quality of life! x

[Shuggy11]

thank you. I think that is very wise advice and will seriously consider it.

[Cailleach]

I am happy to see you have already found someone at the GP surgery to listen to you and help. It is ridiculous that you have never been offered any treatment other than pain relief. If none of the GPs are any good it might be worth changing to another practice though. Ask the practice nurse, she may be discreetly able to say if she recommends any of the GPs in your current surgery.

I would agree with the referral to a Pain Clinic, I found that very helpful. I now take Gabapentin and Nortryptyline. I can’t take opiates or anti-inflammatories; when I did take the latter I found Diclofenac really good.

Nortryptyline is similar to Amitryptyline. The recommended dose is 50mg but I can only manage 10-20 mg due to the zombie effect you mention. I have found playing around with the time I take it helps - late afternoon/ early evening depending on when I want to get up in the morning. Fortunately it comes in 10mg tabs, so the lower dose is possible, but I think Amitryptyline does too,

I also find Paracetamol really useful tbh that is the one where I notice if I have missed a dose! It is a good add-on.

Hope things improve for you.

[Cailleach in reply to Cailleach]

Forgot to say, being post menopause means you have to struggle to be seen re endometriosis because many doctors including gynaes think it does not exist post menopause. Fortunately this is beginning to change.