WEIRD ENDO QUESTION!!!!!!!!!

[Kate8989]

Did anyone feel/find endo had attacked the nerves? I was told I have widespread pelvic endometriosis and can describe it at times like this.....
Tingly sensation (actually feels quite nice) then sharp pain all of a sudden. I looked at my pelvis after this (was on the left side) and I had loads of blue veins popping out. Anyone have anything similar? X

ANYONE?

Not quite the same but I do have nerve pain from endo and actually had a cyst removed from a pelvic nerve, though they weren't certain it was endo. I am on a combination of pain meds including Lyrica for the nerve pain element. It made a huge difference when I started it. I'm now on long-term GnRH meds so technically have no active endo but still have the nerve pain... 7 years of being ignored by the medical profession means I have scar tissue that's not removable.

@ Twotabbycats - thank you so much for replying. I’ve only recently been diagnosed and before I thought I had nerve damage as that’s what the pain feels like. I’m a bit concerned even after I’ve had my laparoscopy that it will have infiltrated so much and done irreversible nerve damage 😔. What does yours feel like? Mines daily and really getting me down... I know I’m on the road to being “treated” but can’t help think if it’s so deep in my nerves I don’t know what they can do x

Sorry you are suffering - it's such a crap disease, isn't it? Mine is definitely better after 2 surgeries and the GnRH drugs, just not completely gone. I had a really awful time when I was chasing a diagnosis though. For me the nerve pain is like a permanent stabbing pain around my cervix (I still have scar tissue there) and my left ovary (though that area was cleared so either it's microscopic endo or referred pain). I've never had the veins popping out though! Are you having any treatment at the moment? I think I t's worth asking your dr about the Lyrica or gabapentin (similar but cheaper!).

@Twotabbycats- it is crap lol. I try and be optimistic but it’s hard.
There’s a lot of work to do with my next surgery so I’m hoping that will bring some relief. What’s Lyrica? X
I’m on an injection at the moment but takes a while to kick in so just have to wait it out. We would like to try for a baby at some point (that plays on my mind a lot) but putting that on hold until after the operation.

Lyrica (pregabalin) is an epilepsy drug that’s also used to neuropathic pain.

Nerves and pelvic pain is all quite complicated - if you have endo that is infiltrating it’s likely to cause nerve pain, but then I’ve also had nerve pain at time where the endo has been more superficial.

any chance you’re using a heat pad during these episodes? That increases blood flow to the area to relieve pain - I’m wondering whether the body automatically does something similar? Or maybe pelvic congestion?

@TammySwansonTwo- yes my endo is deeply infiltrating so I suppose it makes sense im experiencing the nerve pain. It’s almost disabled me, roll on this second laparoscopy!!!! My next op is with an endo specialist so he will be able 🤞🏻to sort it out I hope.
How interesting, I’d never heard of lyrica before and that’s to control the nerve pain is it? Can that be used long term? I think after my op I’ll definitiely look into it xx

I see Tammy answered re Lyrica. There is also an older drug called gabapentin which is similar, sometimes preferred by the NHS because it's cheaper. There is supposed to be a lower chance of side effects with Lyrica.

I'm on it long term (more than 10 years). There are lots of side effects listed but many people are fine on it (I have fatigue and slight wooziness which has improved over time). It's best to start on a low dose (I think I started on 50 or 100mg twice a day) and build it up. I was on 400mg a day at my worst but now down to 75mg twice a day. (I can tell it works because I have tried to lower it further and the nerve pain becomes intolerable pretty quickly).

How interesting, I may look into it after my laparoscopy. I definitely need to find something that gives me definitive relief as paracetamol/ibruprofen aren’t really doing the trick. Do you know if you can take them when TTC/pregnancy? X

The other one is amitriptylene which is an anti depressant but taken at a much lower dose (usually) for neuropathic pain (and there are a few similar anti depressants like that too).

I’ve never got on very well with any of them as I suffer from ME and struggle with the fatigue. I stopped them before I was pregnant so I’m not sure of the advice there - I’ve been on morphine or an equivalent for over 10 years though, and that I did continue through pregnancy and pumping (on medical advice).

I would speak to your doctor about proper pain relief - no wonder you’re struggling on OTC meds. I’ve actually found that diclofenac suppositories are very good during severe pain spells but those I couldn’t have during pregnancy.

You must DEFINITELY NOT fall pregnant on pregablin. Very, very important!

@RTBadmin- what’s pregablin? X

Sorry, it is the other name of lyrica.

@RTBAdmin- ahhh ok. Have you been on it? I’m not going to go on anything until after my second lap. I’m hoping to get pregnant soon after but obviously I don’t really have any control over that x

Yes I was put on it for both pain management and anxiety. It was stressed to me that you absolutely cannot get pregnant on the medication due to birth defects. It's not like other meds where if you get pregnant you then just stop them and all will be okay. The damage will be caused already.

I also put on 2 stone in approx 6 weeks with NO change to my diet. :(

@RTBAdmin- ok thank you for letting me know. I’ll have to see what best to go on. I hate taking all these painkillers but needs must. I know lots of people with chronic illnesses have to take painkillers daily- just life for some of us sadly x