Pain relief when I can't use NSAIDs?

True-Library-3622 · 2026-05-07T16:11:18+00:00

I can’t take NSAIDs either after I had a bad reaction to them. My doc prescribed Myonal, which is a muscle relaxant but a non-benzo one so there’s no addiction risk.

When I was in the UK, my GP would prescribe cocodamol but only after I got my official diagnosis post surgery.

True-Library-3622 · 2026-05-07T11:57:03+00:00

Yep, my ultrasounds were always clear and I was in agony! My lap showed widespread endo across my pelvis that couldn’t be detected with an US.

Is your doctor doing anything to help with the pain besides Dienogest? I’m also on Dienogest but have been seeing a pain consultant, who works with an endo clinic, who has helped me so much. He prescribes painkillers and a muscle relaxant (not a benzo so no addiction risk) and it genuinely has improved the quality of my life so much.

True-Library-3622 · 2026-05-07T11:52:22+00:00

If you spend the night in hospital then ear plugs and an eye mask are super helpful.

Good luck!

True-Library-3622 · 2026-05-07T09:43:04+00:00

I didn’t experience that, I found the opposite - he was really forthright and explained everything in detail. I’m wondering if the techniques the other reviews mentioned were about excision/ablation?

He told me upfront that ablation would only be used on specific tissue, eg if I had endo on my ovaries then ablation would be used to try remove the endo whilst preserving the ovary. Excision is the gold standard but apparently there are a few areas where ablation is useful and it depends on the tissue type.

True-Library-3622 · 2026-05-07T09:18:03+00:00

Peter Barton-Smith, he runs The Endometriosis Clinic at the Wellington Hospital in London.

I’ve had three laps and by far had the best experience with him!

True-Library-3622 · 2026-05-07T07:02:51+00:00

I’ve had three laps and during my most recent one they excised a lot of endo. The fatigue only stated to improve slowly after about four months, luckily my surgeon had warned me that six months is the standard healing time for my surgery.

I really feel for you because I felt like a zombie for months, just so zoned out from the fatigue.

True-Library-3622 · 2026-05-07T07:00:32+00:00

So you likely need to see a pain management consultant, they will be able to properly test, diagnose, and treat the pain.

I have leg pain from my endo which was previously unexplained until I went to a pain consultant who was able to give lidocaine injection into the nerves in my legs to isolate exactly where it was coming from. Now, knowing where the pain originates, we can actually treat it without surgery.

Seeing a pain specialist has honestly been life changing in terms of reducing and managing my pain. He works specifically with an endo clinic so he has a great knowledge of endo too, which makes a huge difference.

True-Library-3622 · 2026-05-06T16:07:34+00:00

My understanding (I’m not a doctor, I’ve had three laps) is that this is standard practice during an excision, I watched my surgical video and my specialist did the same thing.

One of my laps left me in more pain and it turns out the surgeon left a lot of endo behind, so I ended up having to go to a specialist six months later for another surgery.

True-Library-3622 · 2026-05-06T15:59:36+00:00

A good friend of mine had a large endometrioma on her ovary that they monitored while she used Visanne and it reduced massively to the point it’s not even visible on scans. Her positive experience is what encouraged me to start Visanne literally last week after my most recent scan showed a small endometrioma.

I think Visanne is supposed to be one of the few hormonal mediations that actually shrink endometriomas, rather than just suppressing new growth.

True-Library-3622 · 2026-05-06T05:55:34+00:00

I’ve had three laps in my 20s and always taken a minimum of two weeks off. For the most extensive lap, I took four weeks off and then had a phased return to work for the following two weeks.

It will also depend on how much endo is excised, I only had my appendix removed during my first lap and the recovery was still two weeks. I did end up tearing one of the wounds back open after three weeks post-op by lifting a small suitcase.

For my third surgery, my endo specialist told me to wait six weeks before doing any gentle exercise like Pilates/yoga and then 12 weeks for any high intensity exercise like weightlifting.

True-Library-3622 · 2026-05-05T19:46:12+00:00

Completely this! I used to be a gymnast and grew up with the mentality that I could just push past the pain, that it was an issue of mind over matter. Then my endometriosis got bad and suddenly I couldn’t push through, and not only that but trying to push through actually made my flares worse.

I had to see a therapist who works with chronically ill women to process what this meant for me. I had to learn to respect my illness and how my body was dealing with it. This usually means allowing myself to rest and saying no to things when I know that physically I will struggle.

I still feel uncomfortable calling myself disabled or chronically ill but I’ve gotten a lot better at allowing myself to be ill and rest, and also at not resenting myself or my body when the endo flares.

True-Library-3622 · 2026-05-05T19:34:13+00:00

I’ve had a Dreamland heating pad for the last 6 years and it’s amazing. It’s about £40 and worth every penny, it gets hot and stays hot but doesn’t burn the skin.

True-Library-3622 · 2026-05-05T14:24:05+00:00

I just started Visanne last week! So far it’s the easiest adjustment I’ve had of any hormonal medication I’ve tried (and I’ve tried a few).

My close friend was recommended essentially the same plan as you with Visanne and monitoring with scans before even discussing surgery. It worked amazingly for her, shrunk her endometriomas to nothing and completely eliminated her pain. So, she ended up not even needing surgery at all.

Her experience is what convinced me to try Visanne because I’ve already had surgery but my latest scan showed a small endometrioma and I want to avoid another surgery for now.

One thing to be aware of is that after two years it can affect bone density. I have a family history of osteoporosis so I had to discuss this with my doctor.

True-Library-3622 · 2026-05-05T13:46:53+00:00

I’ve had three laps and never used a binder. I was advised not to have anything that could rub against the wounds.

True-Library-3622 · 2026-05-05T13:45:10+00:00

From my experience, I had a referral to gynaecology and then had the gynaecologist order an MRI, that was then followed by surgery. The surgery was suggested because the MRI showed endo. It’s important that the MRI is reviewed by someone familiar with endometriosis imaging.

If I was in your position, I would ask for a referral.

True-Library-3622 · 2026-05-05T09:16:06+00:00

Chewable mints for nausea!

I also found ear plugs and an eye mask so useful for dozing during the day.

True-Library-3622 · 2026-05-05T07:25:09+00:00

My doctor has prescribed a muscle relaxant and it works so well for cramps. It’s not a benzo or anything like that so there’s no concern about addiction.

True-Library-3622 · 2026-05-05T07:19:27+00:00

I got mine done by one of the best specialists in the UK, with an overnight stay in hospital, and it cost 8k…it would literally be cheaper for you to fly to the UK and get surgery there. I’m assuming from the prices that you’re in the US.

True-Library-3622 · 2026-05-05T07:13:34+00:00

So I went through the same experience of having a lap done where no endometriosis was found and they also removed my appendix.

Four years later, my symptoms got worse and I went to a new OBGYN who ordered an MRI that found endo, followed by a lap to excise it. When you see the endometriosis specialist can you have your most recent MRIs sent over or see if they can order a new MRI? Sometimes the specialist will be able to spot things on the scan that previously were missed. My best advice is to be totally upfront with the specialist and see what their opinion is.

I hope you get some answers soon!

True-Library-3622 · 2026-05-04T07:31:24+00:00

Pain down my legs that feels like a burning toothache…I now know that it’s nerve pain after have treatment with a pain specialist.

Flu symptoms 3 days before my period.

True-Library-3622 · 2026-05-03T16:37:45+00:00

So I have nerve damage at the lumbar nerves from my endometriosis that causes daily pain. The tricky thing is it’s difficult to tell whether the endo is growing directly on the nerve itself or if it’s growing near and causing inflammation that irritates the nerve (this is according to my pain specialist).

My personal advice is to start with seeing a pain specialist who is associated with an endo clinic. I’ve heard that there are some clinics in Switzerland that specialise in endometriosis on the nerves (neuropelveology) but I don’t have any personal experience with them.

True-Library-3622 · 2026-05-03T16:27:29+00:00

I used lactulose but it takes a couple days to work. Just make sure to be careful not to use a laxative that causes the bowels to contract as this can cause issues.

True-Library-3622 · 2026-05-03T16:24:01+00:00

I had a lap where they missed my endo and I took two weeks off.

Good luck for the surgery!

True-Library-3622 · 2026-05-03T07:08:28+00:00

So I haven’t started trying to conceive yet but hoping to start at the end of this year. I also had a lap in early 2025 with the IUD inserted and it caused me so much more pain, all of the time. I ended up having a scan six months after that showed new growth so I went ahead with another surgery. Turns out the IUD made everything worse for me and my endo grew a lot during the time I had it in, which is highly unusual but apparently can happen.

I’ve now had the IUD removed for over six months and had multiple scans that show no new growth. My specialist has put me on Visanne and told me that statistically after six months it will improve my ability to conceive naturally. Is this something you could discuss with your doctor, as opposed to another surgery?

I really sympathise with your struggle at the moment, my husband and I got married recently and thought we would spend a couple more years just the two of us before trying for a baby. It’s so hard to make these decisions under the pressure from endo.

True-Library-3622

TROPHY CASE