hi! I saw a gynaecologist yesterday and he went through everything, really thoroughly, and was a really nice man.
At the end he said he thinks my pain is my nervous system being overprotective and telling my body there is pain when there isn’t anything going on.
I have had three surgeries, all found endometriosis, mainly on bladder and bowel and pouch of Douglas. These surgeries were performed by a gynaecologist, not a specialist in endo, so they ablated the endo. I still believe I had endo on my bladder and bowel as I have so much trouble with both of them.
I have come away feeling like my body is just playing a big joke on me and I feel so deflated and crap. I am in constant pain every single day and had to give up my job, due to the pain I experience. Can all this be my nervous system? I really don’t think it is. He told me I need to meditate and do yoga and take care of my body. I have cried since coming home from the appointment as I just feel so crap, like I’m making all this up. I know the pain is there, I can feel it all the time. But no one seems to listen and understand…..
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So sorry to hear that you've had this frustrating advice/gaslighting from the Dr. I feel cautious around professionals who write off someone's symptoms when they are so clearly suffering! Luckily you're in a forum with people who DO understand. I hope you're able to give yourself tons of love and care and ask for a referral to an endo specialist and keep bugging them until you get what you need. Trust your instincts!
Oh babe, I was right where you are on the 23rd December. My supposed "specialist" was like I've ablated the endo and separated the adhesions that stuck your stomach to your uterus...so I can't do more for you. He said my left flank pain was not endo related, and asked if I had a scan on my spine to rule out physical issues with my back and legs...I said I've had so many I can't count. Ultrasounds and CT scans on my kidneys, no cause found for the blood in my urine. He just sat silent. He said he has done the surgery and as far as he is concerned I should be fine now...when he knows full well it is NOT that simple. If a specialist is being this dismissive, I can't even imagine how hard it must be for you with a general gynae!
I have kind of wondered if he is being defensive because his surgery didn't help me enough (pain reduction, not gone)? Or that he is so overstretched and has such a long list that any patient who isn't an easy fix is too much of a hassle, so he blames me and says I'm just mental lol. His exact words were, it could be psychological...which was a killer to hear after finally being diagnosed in August with severe endo.
I've decided to just try and manage my endo myself, and monitor for extreme symptoms that are worrying. Yoga is actually helpful, but absolutely not a cure. I am going to try focus on "quality" as opposed to being cured, and as long as I can manage my pain, do my uni work and have a life of some sorts (with adaptations to help me) then I'm good. I just can't be house/bed bound, which thankfully I'm not anymore. But the pain still requires morphine for me to "get through". I'm okay with this, for now. But I am disappointed that these surgeons think they will do the op and somehow it's a cure...yes some patients get full relief, but lots don't, and lot's have it return super fast (even within 6 months like myself). They shouldn't dismiss us, or blame our mental health.
I will say though that endo CAN cause nerve pain! There's lots of nerves in the pelvis, and if things are inflammed they can cause pressure on nerves, which then shoots pain signals down your back and legs. A physical issue can absolutely cause nerve pain, but that doesn't mean that pain is "in your head". It just happens to be a message sent by the brain IN RESPONSE to a physical issue in your spine or pelvis, where lots of nerve related issues begin.
Sending love to you! Stay strong. I would push for a specialist considering you have severe endometriosis. A general gynae should not touch you!
thank you so much for your reply! ❤️ I have had endo for almost 7 years now and had a hysterectomy back in 2017. And still in so much pain. The drs want me off the morphine cos I have been told I’m pretty much a junkie now! 🤦🏼♀️ I just don’t know why its such a hard process, getting the care you need.
I do think nerves are a problem with my leg and back. All pain is situated on my left side. He told me to watch a you tube video called tame the beast. And it’s about pain and how you can retrain you’re body and mind to stop thinking there is pain there when there isn’t and stop being overprotective.
To me is just seems like bullshit. But I will give it a try, cos I will give anything a shot. Cos you never know.
But I just wish so much that some could listen to me properly and they would have a good knowledge of endo and how to help me .
Have you got any specialist endometriosis centres near by? You can search the BSGE register with your postcode and see what pops up. We only have one NHS specialist centre in my region, so my choices were limited. There was another private one, but that would cost a fortune in the long run. I would go back to your GP and explain that NICE guidance states that any person with severe endometriosis that is effecting other organs should be seen at a specialist centre with a multidisciplinary team. That's enshrined in our system, if they fob you off then make an official complaint because severe endo should not be touched by a general gynae. I am so relieved that I have a specialist, even if he is being a bit dismissive post surgery.
That sounds intriguing, there's nothing wrong with trying stuff like this alongside medical stuff! I also recommended TENS, it is a good distraction from back pain. Have you tried CBD oil at all?
I have been referred to a specialist in at Peter’s hospital. But they have no appointments at the moment. I moved gps and my new one is so lovely. He is helping any way he can.
I have a tens machine and a heat pad I use pretty much every night and day.
I also went and had colonic irrigation as I’m so constipated and can’t go to toilet for weeks at a time. Even though drs have given me so many laxatives, they don’t work.
My bladder is knackered too and have regular utis and incontinence.
I’m hoping I can see this specialist soon and he will be my along waited knight in shining armour! 😂
Fingers crossed the specialist is better and has a decent plan then love! I really hope they help you, I've heard mixed results tbh. It's a shame there is no current universal treatment which helps everyone, making Management even more complex. I'm sending lots of love and support, this is a long road but we are all here to listen if you need to scream into the void lol xx
I'm so sorry this happened to you! But please know there are still lots of options, this isn't the end of the road, I promise. You wont be left in pain like this, there are next steps! You are not making it up, it's real.
A doctor's job is to a) give medical care or b) refer you onto specialists to give you said medical care if it's outside their speciality. They should not make you doubt the reality of your pain, make you feel deflated. That is a poor reflection on THEM and their quality of care, not on you!
The treatment for nerve related pain is not to simply do yoga and meditate. If he seriously suspects nerve issues he should be sending you to a pain specialist to discuss next steps (I have nerve damage from endo and I'm currently in that process now, happy to talk to you about it if you want to hear about the process and the options)
Is this doctor a BSGE approved specialist? Here is a list of endo centres in the uk: bsge.org.uk/centre/ these are the best specialists in the UK - they have to complete a certain amount of successful complex surgeries to be considered for the list so you know if they are on here they are the best people to see. If you can, try and get referred to one.
If you have any more questions feel free to reach out. I've been where you are and my heart really goes out to you. You will get an explanation for your pain. I'll help in any way I can.
thank you so much for replying! ❤️ he is referring me to a pain specialist, I do have one already but he said about doing this for pain education programme. Honestly he was such a lovely man, but I do think unless you have a great understanding of endo and are a specialist then you shouldn’t just say, surgery isn’t an option. He said that all my other surgeries have had it come back dispute it being taken out. But I said but they only ablated it out and not excised it. So the likelihood of it coming back is high. But he said well it comes back after surgery so I don’t think surgery is an option as it doesn’t help. But I think it could if I have the right person on it and did surgery correctly.
I wouldn’t go to a vet groomers and get a full head of foils and expect miracles. Kinda of the same here!?
I just wish someone took my seriously. He did, however, say he does think my pain is real. But just my nervous system is overprotective.
I don’t know I just honestly haven’t stopped crying and I know I sound like so over dramatic. But I just can’t cope at all. He told me to take away any stress in my life. And I said jokingly, well there go my kids and husband then! 🤦🏼♀️ he said I need to de stress and go for walks in nature, yes he honestly said that! As a mum and wife, my life is so stressed and I can’t just give it up cos I need to be at one with nature? Right?
I think doctors can be really kind and lovely whilst still practising outdated or incorrect methods of medicine. Surgical excision is the gold standard treatment for endo because it has the highest success rate and the smallest reoccurrence rates, it says so in the NICE guidelines. He's making claims that aren't factually accurate. Perhaps you can ask him to show you in the NICE guidelines where it says that if you have ablation and are still in pain you would not be a good candidate for excision surgery? Ask him to put that in writing. I bet he will research it and change his tune pretty quick!
In all honesty though, I would urge you to get in contact with your GP and ask them to refer you to an endo specialist so you can get treatment as quick as you can. It sounds like you're really really struggling, and you deserve relief from this level of pain. Endo is a complex disease and it takes someone with the right level of expertise to treat it correctly.
Though interactions like this with doctors can feel discouraging, there are plenty more out there who will have the knowledge to help you find treatment that is suited for your condition!
Lastly I just want to reiterate that you are not being dramatic by being upset about this. Living with on going pain is traumatic in itself, but having to fight to be taken seriously by doctors is a whole other level of trauma on top. Anyone in your situation would feel the same way (I know, because I've been there!) But please don't loose hope, there are ways forward, I promise.
You poor thing. I understand exactly what your going through but for many many years now. You need to be looked at by a bladder and bowel consultants were they may offer you another operation together and remove any Endometriosis that is attached to your bladder and bowel Hope this helps. 😏.
So sorry you’re going through this! I agree with holistic approach but it can only do so much.
I saw a general gynaecologist recently, same kind of experience, lovely woman but has no clue about endometriosis. She didn’t understand excision is better than ablation.
When I pulled out the listed of surgeons printed from the BSGE website, she looked puzzled, I got the same reaction from GP. They really should know this information.
I am seeing a specialist surgeon who specialises in nerves tomorrow, he is based in London and Surrey and on the BSGE list.
I hope you find the right person for your specific needs 🙏🏻
this sounds familiar and I’m sorry you’re having to experience it too.
This new “explanation” they have for our pain is in my opinion gas lighting and a way of fobbing us off.
I was told the same thing but know my body and know the pain with endometriosis and also the pain it brings when it’s returning after surgeries.
He reluctantly offered me an mri scan and my gynae was still insisting it couldn’t possibly be Endo as I’ve had so many surgeries etc etc but the MRI proved it had returned.
It’s only in the last couple of years I’ve heard this new explanation of my “nervous system being too sensitive” I suspect it’s to keep their waiting list numbers down.
I’ve had to get very assertive and tell them I have in fact a very high pain threshold from having to deal with Endo for so long without any proper care or treatment. In fact when i broke my leg in two places I was able to walk on it.
I think even the doctors, given how intelligent most of them are supposed to be, can’t possibly believe that a disease that causes internal bleeding, adhesions and organs to be mangled together can possibly believe this theory they keep giving out.
Makes me really angry, sorry I’ve gone on a bit here.
It’s typical gaslighting and you deserve better.
I would either write a letter of complaint or ask to be seen by an Endo specialist. My physio who is brilliant has strongly advised I take someone else with me to all appointments to witness and also be the assertive one if needed, I guess this is because she knows so many are being fobbed off right now due to nhs pressures.
Best wishes to you. Message me anytime, I’m in a similar position you xxx
Hi I hope you managing your pain🥰. When I read your post I felt like you just describing my situation.
I have stage 4 endo in my bowels few adhesion between my back and my bowels and uterus.
I have nerve pain sciatica and rush all over my skin. My gp made few referrals to physio therapy however the nerve pain never got better then they referred me to pain clinic they said bcz the pain is spread in almost my whole body they can not treat it, then they suggested that I have to see a psychologist 🤨 then to mental health team .
I am just wondering! Hearing all these women have same diagnosis and same symptoms it’s obvious that Endometroisis has way more damage than they just think, one of them is nerve get damage it’s not just in our heads.
you sound so so similar to me. Honestly it’s a bloody nightmare. I do get down loads due to the pain and no one seems to listen to me or actually help, just give me more meds.
I can normally pick myself up over the following days, but lately I am finding it so so hard to find positivity in this. It’s been almost 7 years of fighting to get people to listen. I was referred to uclh about 3 years ago and they were just no good and just said it wasn’t bad enough on the mri so they discharged me.
I hate it, but I’m awaiting to see a new specialist and hopefully I can get someone who understand endo and performs excision and not ablation surgery.
I hope you get the care you need and start feeling some relief from the pain
It feels like the bottom drops out of your world when however kindly said this is the proposition put forward. Firstly, try to separate the possibility ( and it is only that) that this is right from the dismissive perspective often launched at us that we are imagining it or it’s being a neurotic woman. It’s easy to feel insulted or gaslit BUT pain problems as an issue is taking some useful and important moves forward in the last 10-15 yrs and being dismissive of offerings can be counterproductive.
He may well be right , he maybe partially right , he may not be right at all however pain is a complex beast especially with an ongoing progressive problem like endo where there may well be other factors involved too. You can address this yourself and see how far this proposal helps -or not - by using the Curable App. I’ve found it really, really helpful and it has the bonus of being something that’s always on hand and isn’t a pill or a treatment being given by someone else. My GP gave me a free six week pass and I’ve signed up for the long term at a very modest cost. I wish I had known about it earlier and been less sceptical when I first encountered it. I had done the CBT, yoga, meditation, exercise blah blah bit before and it wasn’t effective like the programme has been for me. Let’s put it this way you’ve not much to lose by trying ? My GP also tried me on a centralised pain relief Nortriptyline at low dose as my mental health was on the floor to give me some support and at the time it was useful. Being largely out of pain has been a real boon.
Practical other issues are pelvic floor core health. If the core isn't functioning properly ( which it isn’t for most with endo) then nerve pain can be a significant consequence. Either way addressing it can significantly change hormone balance and problems with pain etc. If you don’t know much about it I love a talk between @leah.Brueg on her podcast with the pelvic floor specialist Dr Angie Muller. It’s on her podcast list and it’s an hour of jaw droppingly amazing lightbulbs. Kate Edmonds talks about it in her book Heal Endo and that’s a useful source with beginning to grapple it. Some BSGE centres have specialised pelvic physiotherapy services and it’s worth seeing if you can get help there too.
There was a really informative discussion by @endometriosissummit just done on nerve pain and endo pain too that ought to be worth an explore so you can review for yourself if it’s an avenue that you need to explore.
Lastly I found high quality Omega 3 a lifesaver for neural pain and take it daily . We are complex creatures with a complex disease and for that remember at all times our layers of needs are not insignificant to make a reasonable change to our welfare.
Having a centralised pain issue is the body’s response to significant and traumatic levels of pain over a long time. Endo certainly ticks the boxes here and there is no shame at having to tackle it as part of the road to recover the self we lose along the way. We need not to be so fixated that this is only a problem that surgery can fix. It’s part of a solution and sadly however well done it does return or the frequency of interventions can bring complications of their own which of themselves being long term management issues. This is not an easy bag for any of us and knowing when the limits of any approach has been reached a complex call. Any decent surgeon will ask is this a problem that I know that I can reasonably offer a positive outcome for or do I need to refer it elsewhere or suggest exploring other strategies. It maybe the limit of their current knowledge and in that sense the honesty involved has to be acknowledged- better than the arrogance of the know it all personality.
Surgery needs to be done at a high level of professionalism however lovely or not the person is. You may need further work and ensuring you get the best care amid your own self care programme . Either way learning about pain will help manage pain when it occurs or recovery after surgery-it be a less fear ridden place and hand you some level of control so really there is little to lose in giving it a whirl. There isn’t one route to getting better . There’s your way with all the support you deserve.
thank you so much! You have so many amazing points and help in your post. I’m up for honestly giving anything a go. So I will do what he has asked me to try, as like you said, it can’t hurt trying. 😀 I will also look in that app you said and see how I go with it. Thank you for all your help, honestly this forum is so amazingly helpful and I’m so grateful for everyone’s advice and help ❤️
Let’s hope it helps. It’s always a tough place to “hear “ what’s being said and being able to take what we need from it. We are the experts of ourselves and condition but at the same time swim in a sea of confusion. It’s not always easy to navigate is it ?
Yes, pain can be in the nerves. Have you explored painful bladder syndrome? It can present as constant pain in the pelvic area. You can also get pain in your pelvic area if you have wear and tear in you spine. I can not diagnose these things for you but it may be something that your health care practitioner can explore with you. You may be able to join a pain clinic if you ask you doc. Also if you have, like me, an extra bit of weight on, get it off. Carrying over weight makes pain worse., from personal experience. The last thing is take painkillers at the appropriate dose. Don't be afraid to use them, they can make the difference between movement and no movement. Exercise even if it kills you with pain. Do resistance,
All I am telling you is from my own experience of pain, not medical advice. I suggest you explore pain rather than just endo. Endo is so all consuming, its easy to forget that you can have other things as well. Also, easy to say but hard to do, relax.
When you say you have been referred to Peters hospital do you mean the Ashford and St Peters endo centre? You sound likely to have rectovaginal endo - this affects the pouch of Douglas, bowel, back of the uterus/cervix and uterosacral ligaments. It predominantly affects the left side and typical symptoms would be lower back pain, bowel pain/problems, pain with/after sex and referred pain down the leg, most usually the left. This is nerve pain but it is very much not imagined or any sort of oversensitivity of your nervous system. It is the nerve in the uterosacral ligament being affected by endo - this nerve has its roots in the spine where the sciatic nerve arises, hence the referred pain.
A general gynaecologist shouldn't even be giving an opinion, let alone operating three times. If you'd like to join a group called Endorevisited you can post all your lap reports and access details on exactly how to get referred to an endo centre as most GPs don't understand the procedure. x
Hi, I was diagnosed with endo last year but also have long history of a lower back pain. Because of lenght of my issues I know that my muscles and nerves sometimes go into overdrive mode and cause additional pain and discomfort. I can literally feel the tension it causes for days. It doesn't mean that pain is in my head only, but can be amplified by me being stressed about it. I had once chat about this with physiotherapist. He explained to me mechanics of it. I just wish doctors communicate it in a way that doesn't sound like we make it all up.I do use Curable app to help me managing those additional problems and teach myself how to deal with pain. It won't reduce it completely but helps to change perspective and gives me strenght and some level of mental control.
I’m sorry you are going through so much. Maybe get a second opinion. Don’t give up until you get answers. You know your body. I wish you all the luck in the world
Trust your instincts, I’ve been told nerve damage. I’m not denying it could be. I don’t believe the crap they say about the body hanging onto pain, if that were the case I wouldn’t get precious moments lying down where it eases. I’ve been right each time so far.
It’s about gathering strength and pushing for answers. It’s hard though but can work. You need to see a specialist who cares, you aren’t imagining anything.
Go back to GP and tell them you need a referral to a BSGE specialist.
I’ve got physio on Monday with a specialist in verve disorders.
It could be hormonal issues or IC/BPS INTERSTITIAL CYSTITIS AND BLADDER PAIN SYNDROME added to bowel like dysbiosis you can pay for private gut testing online and see what u got.....Doctors never helped me much only internet , thyroid, CFS/ME, Diabetes other things I know of or autism can all be possible avenues
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