my pain relief was a placebo and now I don’t know what’s real

[crbp]

I’ve had 2 surgeries for my endometriosis each of which provided about 3 months of relief then the pain came back.

I’ve been told recently by multiple specialists that the placebo effect of endo surgery lasts about 3 months.

I’m glad to have gotten any relief but it’s crushing to realize it was “in my head”. With all the gaslighting I went through to get a diagnosis and feel heard this feels like a big step backwards: it has me questioning if my pain is as bad as I think or if I’m just being hysterical or if any of it is real.

I’m being offered another chance at a surgery with 3D/4k imaging and I’m terrified that this won’t work either and it’ll all be another placebo and I will be back exactly where I was at the start.

I’m starting to feel really hopeless with the whole thing and I don’t know if I trust myself anymore

[Lindle]

Wow, that is so shocking. Treatment for endo, whether medical or surgical, is to address pain so this is saying that endo doesn't cause pain. Whatever you do don't believe this - it just confirms the ignorance of the doctors saying it. At the very beginning of the ESHRE guideline, that all gynaecologists must abide by, it says:

'Whilst not all women with endometriosis are symptomatic, endometriosis-associated pain and infertility are the clinical hallmarks of the disease affecting not only women with endometriosis, but also their partners and families. An impact of endometriosis, and particularly pain symptoms, has been shown on quality of life, but also on a range of activities and life domains including physical functioning, everyday activities and social life, education and work, sex, intimacy and intimate partnerships, and mental health and emotional wellbeing (Culley, et al., 2013).'

It would be useful for you to obtain copies of the lap reports to see how severe the endo was as you might qualify for referral to an endo centre now. It's called a Subject Access Request. Will DM you. x

[Hidden]

My husband is a psychiatrist he also told me it's in my head. But that doesn't mean I am not in pain just that the brain memorized the pain and now it gets signals and sends pain. Something like this is what I understood. For me painkillers never helped only made it worse. Stress relief is the only thing that helps me. Going to doctors is a big stress for me and I get pain for two weeks after a dr. sees me especially if he scares me. Reading everything about this disease will also make you crazy I think at one point I will delete my account , but it does help to know that not only my husband thinks it's in my head. But what are you diagnosed exactly with? Where is the endometriosis and how severe it is? Did they give you any hormonal pills or just painkillers?

[JulesUK]

WOW. I thought I’d heard it all but it seems we’ve now another stick to beat us with that it’s all in our head. These people shouldn’t be practising. It’s outrageous. I’ve had several laparoscopies. Some have been successful and some where they have not been carried out correctly have not. Also there are times when the endometriosis cannot be removed, and of course adhesions cause their own problems and pain. Trust yourself, and people who live with this condition day in day out. Don’t stand for this and find yourself someone who understand endometriosis and treats you with respect.

[My_Username]

That's absolutely appalling.

Endo can reoccur after surgery (especially if the surgeon wasn't thorough enough). It sounds like they're trying to gaslight you - have confidence in yourself and don't put up with it.

Is it possible for you to take a supportive friend or relative with you to the appointments? And do you have any choice of which gynae you see?

I had Drs fobbing me off for years, until my endo was so bad I needed 11 hrs of surgery. I had hoped that things would have changed for the better by now, but obviously there's still a long way to go.

"1 in 2 women feel they have had their pain ignored or dismissed because of their gender." Neurofen See My Pain campaign

[Thena90]

Surgery is not a placebo, you aren't hysterical, your pain and your lack of pain is REAL, look these are the results of the last research, they were presented yesterday.

Graphics showing the improvement of pain and quality of life after surgery

[eunha]

Wow. its definitely not in your head. After seeing the top experts all I've realized is that this disease is far less understood and harder to identify than thought. Im so sorry you have been gaslit and treated so poorly. I've left many appointments crying, even though I always brought one of my parents with me, the doctors still blew off my pain as mental health problems and even ignored my parents input as to the degree of my symptoms, to the point that my parents were appalled at how they treated me.

Skip to the end--I had surgery by a top expert, did Not get a positive diagnosis for endo (but my sister did) yet my hysterectomy still vastly improved my pain.

I'm so sorry they are making you feel like its in your head. Totally not true. Its a bad doctors excuse because they are dealing with something over their heads and they rather blame it on you than admit they don't know.

I have one doctor that is amazing because she is super competent but my condition is just out of her field, yet she never dismissed me. She validates that its not just in my head without me even asking her for validation. And she apologizes that she doesn't know what else to do for me, while continuing to do what she can, instead of avoiding me as a patient. Good doctors like this are hard to find but this is how all doctors should be instead of putting you down and making you doubt yourself unnecessarily.

I went through all the trauma of doubting myself as hysterical. Even when we are suffering from anxiety or depression, does that mean thats the only illness we'll ever have? Of course not. And being unwell physically will naturally affect our mental health too. This is not just all in your head ❤️ Sorry for the rant. Hang in there love ❤️

[Moon_maiden]

There is a big thing in the medical world at the moment that they say the body/brain remembers pain and stays with us. I keep getting told this by various. It drags you down and I personally don’t believe this, otherwise my pain wouldn’t vary depending on what I’m doing. I believe the Endo has done nerve damage, but that’s not a memory. It gives them something to fall back on because they can’t help otherwise. Have a look at the pain society website there are back issues of their magazine. I am 99% sure I still have adhesions that should have been removed previously but weren’t because they were not considered ‘substantial’ and that’s direct term from the surgeon. He admitted only removing substantial adhesions in an email.