I had an appointment yesterday to see a pain specialist to help me manage my pain while I wait to have my diagnostic laparoscopy.
For context: My mum and my sister both have endometriosis. I have all of the symptoms as well but it has taken a long time to get on the road to a diagnosis. It affects my daily life greatly and I'm practically bed bound because of my pelvic pain.
So at my appointment, the specialist proceeded to tell me that after looking at my notes and listening to what I had to say, she does not believe I have endometriosis.
She told me that what I actually have is nerve pain caused by low mood/anxiety and my brain interpreting normal sensations as pain.
When I told her I wasn't coping with the pain, she told me that it's just because I'm depressed and that there's no medical reason I can't do daily tasks. She told me that if I raise my seratonin levels the pain will disappear, and prescribed me nerve blockers while I work on that.
She also told me that there was no point having a laparoscopy as she was very certain it would show nothing. She told me not to bother pinning my hopes on it giving me answers, because it won't show anything as "there is nothing wrong with your internal organs, it's your nerves and anxiety".
She then told me she wanted cancel the laparoscopy since there was no point having it in her opinion, but said that there wasn't much point interfering since I've been on the waiting list for so long.
I feel very upset and confused. I understand that she may be right and this is my diagnosis now. But several gynecologists have told me they suspect I have superficial endometriosis and wanted to do a laparoscopy to check.
I feel very uncomfortable that this specialist wanted to cancel my laparoscopy and that the only thing stopping her was tedious paperwork and procedures.
If my laparoscopy shows nothing, then she was correct. If it shows something, I get an endometriosis diagnosis. It seems to me like a worthwhile thing to do regardless?
Does anyone else have any thoughts or opinions on this? I'm just very confused and not sure how to process or accept this. It was hard enough worrying that I had endometriosis, but now she's saying my mental health has caused this.
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RueBlu3
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hello I would say that someone at a pain management clinic will certainly not be able to diagnose endometriosis just based on your symptoms and what their opinion may be. This is why we have gynaecologist and laparoscopy for diagnosis purposes. If this was me I would not be happy either. I would say to you make sure she/he hasn’t cancelled this surgery for you. You know the pain you are in, don’t let this pain management clinician play down the amount of suffering you are going through. Xx
please don’t listen to a word she says. Even the day of my diagnostic laparoscopy I had a woman from the pain clinic visit me who told me that it was most likely in my head and that am I already on anti depressants if not it might help. They did find superficial endometriosis. Never let them belittle you, it’s horrid. Only you know your body and your pain and you have every right to fight for it. Regardless of ‘where the pain is coming from’ you are still in pain. Keep fighting my darling! We are all behind you xxxx
she probably has no understanding of endo or any experience in that field. I've had this before and its one of the most infuriating and insulting things they can say, to me thats them saying im putting it on!! What some small minds cant seem to understand is the depression and shit comes BECAUSE of the pain!! Keep pushing for proper answers not someones guess!!!
Though I know why she dared it is because you are young.
She can't diagnose you as she doesn't have the expertise and the means. She can't cancel your other appointments with other specialists thankfully due to procedures.
Please contact who referred you asap (Monday), give them her name, explain what she said to you and that you don't feel happy going to anymore appointments with her unless you have a chaperone.
If the pain clinic is part of a hospital also put in a written complaint to PALS.
(Don't be afraid to ask a family member or friend for help doing this. )
Then cancel any further appointments with her unless you can get someone you know is sensible to sit in the appointments with you as a chaperone. She won't be happy with being observed but it will stop her saying nonsense and she will have to listen to you. There is no point in you seeing her unaccompanied.
I suspect she has done something like this before with different illnesses, but as no one or not enough patients have complained nothing has been done.
Thank you so much, I wasn't sure if I was overreacting by being upset and thought I didn't have a right to complain. But I'm not happy with what she said so I'll definitely take your advice.
You must always feel in a position to query and complain . This is key to ensuring this type attitude - which is appalling - can be challenged head on. It’s NOT good enough.
This is just awful. This is why I would not go to a pain management doctor they are just there to fob people off.
She cannot possibly diagnose you as not having endo. She is not a gynae and even if she was a gynae she has done precisely zero investigative or daignostic work. Frankly I hate medical people who behave like this, just rubbishing their patient's experinces and ignoring what the patient is living through day after day.
It always makes me want to do something like hit them really hard on the hand with a hammer (I'm not advocating this just saying how it makes me feel, no one should ever do this) and then when it really hurts say, "ah you see it's simply all in your mind, I think if you focus on other things the pain will diminish it's mostly in your mind ". I think the only explanation is lack of empathy and sheer arrogance but this stupid theory was quite widely taught a few years ago at uni.
Take a deep breath, never go to see this person again.Go and get a good scan done by a proper sonographer who specialises in endo/gynae issues. This will simply give you a very accurate visual record of any endo you might have. Then the sonographer can refer directly to a surgeon who should be able to help.
If there is endo you have your answer for what is causing the pain if not then it must be something else like gallstones, kidney issues, gastro issues etc and you will need to keep pushing til you find out what it is.
Good luck and don't let the bar stewards grind you down. xxx
Thank you so much, this really made me feel better.
I have had ultrasound scans and they came back clear for masses etc. However, my gynecologist is an endometriosis specialist at an endo clinic and he believes that these scans just prove I dont have deep endo. He told me that the only way for him to know for certain what's going on is to give me the laparoscopy. So that's why I was so angry at her! I feel like doctors don't read patient notes sometimes...
Thanks for your support! Xxx
Hi there, I am in a slightly similar situation to yourself and use Duloxetine to help with my chronic pelvic pain.
This sounds to me like she is basically saying you have central nerve sensitisation. In my experience most people referred to a pain clinic are now being told this. What she hasn't mentioned is that this was likely triggered by inflammation that disrupts the way your nerves process normal signals, so they now interpret it as pain. There are a number of anti-depressants used in pain management to combat this. You may find that her pain plan is helpful to you and combatting your anxiety and depression (no doubt made so much worse by your chronic pain!) might improve your pain. However, this does not mean you don't have endometriosis or another pelvic health problem as the initial trigger for this. She has no expertise on endometriosis and had no right to comment.
My advice is to continue with your gynaecology consults and if your laparoscopy is clear, continue to push for further investigations for other causes of chronic pelvic pain with gastro and urology. You have a right to find the root cause of your pain, so that if a treatment is available you do not have to rely on the pain clinic prescribing you highly addictive drugs (often with severe side effects) that your body will possibly stop responding to over time.
There is so much to be done in educating healthcare professionals in woman's health. Do not see this woman again if you attend the pain clinic, and do not let her gwr you down. Its your body, not hers!
Best of luck in your diagnosis. Hope you feel better soon 💕...
What made me more angry with her is that I could tell she hadn't read my notes properly. Because if she had, she would have known that I've had other symptoms, not just pain.
And she would have known that my care was being managed by a GI specialist who also roped in his trusted colleagues in urology and gynecology (endo specific). They all agreed after investigations that the issue was not gastro related, and told me that a laparoscopy with cystoscopy was the best way of really figuring out what is going on.
So the fact she wanted to cancel it made me feel so helpless and sick!
Nooooope. No, no, no. Silly woman! I have been told time and time again the ONLY way to properly diagnose endo is from a laparoscopy. I had a gynie tell me I didn’t have endo even though some had been found 8 years previously. He said ‘eurgh, I mean I suppose you can have a lap if you really want?’ At the time I declined it as I trusted the flippin ‘expert’ but three months later the pain was so bad that I called and asked to have one. The outcome was I had ‘extensive endo’. His words. Post-lap. THEN he said the pain I still had 6 months later was a ‘bad back’. I did a lot of research and found an endo specialist (not just a gynie) at an endo centre in Manchester and (unfortunately) paid to see him (was desperate). My left ovary was stuck to the tubes to my kidneys (ureters) which were coated in endo and had been left that way by the previous guy because….. well I’m not sure why. Probably because it’s a difficult surgery with experience and special equipment required, none of which he had. But he could have referred me to the consultant I had to pay to see. The last lap was a success. Do your research, find endo specialist, know your body and don’t get pushed around by them. They, worryingly, don’t know everything!
It’s also worth saying that I have struggled with anxiety and depression on and off. I believe endo can cause/exacerbate that. I do know being in constant pain can make anyone depressed. Looking after your mental health is always a good idea but to suggest your pain comes from your anxiety, without an investigative laparoscopy, is laaaaaame.
I’m sorry you had to deal with that on top of everything else!!! It’s horrid being the bolshy patient but I certainly had to become far more assertive than I was before I started my endo journey.
The lap is no longer the gold standard for diagnosis (ESHRE 22). A scan must now be done first to try and identify severe disease so those cases can be referred straight to a tertiary centre in order to avoid an unnecessary diagnostic lap that often misses deep endo as it doesn't show if beneath the peritoneum.
I was pushing for more scans but they wouldn’t give them to me!! Maybe they all need to catch up to this then! My ultra sound scans showed nothing but were not done by endo specialists or sonographers who dealt with endo. If I had relied on those I would still be in a lot of pain and have a lot of endo. It’s 6 months since the last time I was told laparoscopy is the only way, once again there’s new information and not everyone is up to speed/trained to look for the right things!
Thank you so so much, I really felt down and alone after that appointment.
I'm so sorry, I can't believe that happened to you! Those kind of stories are what I worry will happen to me.
What scares me most is that I don't feel my doctors communicate with each other, because she didn't seem to know that I have already had ultrasound scans and hospital admissions to wards due to infections and heavy bleeding etc. I'm sure anxiety doesn't cause that...
So if they're not communicating, it feels like my notes will have missing information and then my issues will be missed or ignored and left to get worse.
Wow! This is truly outrageous. The first thing I would do is write what you have put in your post in a letter with all your identification details and send it to the 'Lead for clinical guidance' at the hospital with a complaint against her for failing to follow national guidelines for suspected endo and undermining the authority of the gynaecologist treating you. Ask for it to be recorded in your hospital record. If you don't know her name find out - it should be on the letter she writes after the visit but the hospital can tell you anyway. Allow yourself to feel empowered and not intimidated by this person as it is she who clearly doesn't have a clue and was stepping right outside her remit in attempting to give an opinion on whether or not you have endo.
Going back to basics, endo is suspected by symptoms so have a look at a post I put on previous and identify what symptoms you have, both at period time and at any time of the month. As endo progresses the symptoms do in fact become more and more of a nerve-related nature. After all, all pain is nerve pain at the end of the day to a greater or lesser degree. For example, more severe endo typically involves lower back pain and referred pain along the sciatic nerve that might be felt anywhere from the buttock, thigh, hip to the leg (most often but not always the left). There can also be any manner of shooting nerve pains up the bum, vagina or anywhere really as endo fibrosis gradually encases nerves and pulls on structures it is stuck to and the slightest movement can be excruciating. Come back with a summary of your symptoms and particularly those she has latched onto as 'just' nerve pain.
On the subject of the lap, be aware that a lap is no longer the gold standard for diagnosis - a scan should be done first - have you had one? The problem we have currently is that most ultrasound scans are done by level 1 sonographers who are only trained to look at the reproductive organs, primarily the ovaries. Ovarian endo in the form of endometriomas are readily identified and when present these are a good indicator of rectovaginal endo if the symptoms match and the sonographer needs to go on to look at the cardinal sign for rectovaginal - the 'sliding sign'. This determines if the bowel and uterus are stuck together (negative sliding sign) which is a pretty precise indicator for an obliterated pouch of Douglas which in turn usually gives rise to the sort of nerve pains referred to above. Susanne Johnson, world-renowned expert in ultrasound detection of deep endo from Southampton, says that this sign is very easy to look for and is currently working with BMUS (British Medical Ultrasound Society) to get it included in basic training for suspected endo scanning.
Thank you very much for your response and all your helpful information. I will definitely file a complaint as I am not happy. I was worried I was being delusional or stupid when I couldn't accept what she was saying, but everyone's advice has helped me realise that I am right to feel upset.
What made me more angry at that doctor was that I don't feel like she read my notes. If she had, maybe she would have had a different opinion.
I have had about 4 ultrasound scans in the past 2 years, and while the majority came back clear, my most recent one in July showed a distended abdomen and a little bit of free fluid.
The sonographer also couldn't see my appendix and kept asking me when I had it removed - which was spooky because I've never had an operation before so I definitely still have my appendix! They told me they weren't immediately worried as a small or hidden appendix means it's not infected, but they recommended it gets looked at in the laparoscopy.
I also had an MRI scan back in January this year. It showed that my uterus is tilted far forwards (they mentioned a percentile but I really can't remember the number) and I had a little bit of thickening of the tissue around my bladder, but not enough to cause immediate alarm.
My gynecologist and surgery team are part of an endometriosis specialist clinic (the lead surgeon of the team is a professor at the medical University, specialising in endo).
They still believe I have endo and said that my clear scans mean that I don't have deep or infiltrating endometriosis. They feel that most likely I have superficial endometriosis - possibly around the ureter due to my symptoms of bleeding from my urethra, urine infections etc. That is why I am on their waiting list to get a laparoscopy with a cystoscopy. They told me my surgery with have an endometriosis specialist and renal specialist.
This is why I felt so upset when the pain specialist told me she wanted to cancel the operation, because I already had a team at the endo clinic tell me it was best to double check. I've already done all the hormonal treatments and procedures they wanted me to try before recommending a laparoscopy, it was a long road to even get the surgery referral.
Edit: I also don't feel that anxiety or depression would cause me to have blood in my urine or to have high fevers. You can't fake that...
According to my GP records I was imagining all my symptoms for 20 years!
It sounds as though you are under the appropriate team so hang onto that. But if you do find you have endo I would definitely send a letter of complaint to stop her doing this to others. Is there any wonder diagnostic times are so long and imagine if you had only been to an unqualified gynaecologist who wrote off your symptoms and then sent you to her. Doesn't bear thinking about. You need to know one way or the other. It isn't Oxford by any chance is it?
Wow, that's terrible! Can't believe you were fobbed off for so long.
I wish the road to diagnosis and recovery wasn't so tedious and long. Feels like you have to write a thesis everytime you meet a new doctor in order for them to believe you!
Thank you again for all your advice, I really appreciate it.
I'm based in Edinburgh at the EXPPECT team with Professor Andrew Horne.
wow Lindle, this is the first time I have read a post or anything for that matter that reflected my endo experience and areas where i feel pain.
It has been years since my Dx and laparoscopy which was not very successfull. Managed it for long time with pain meds but the last year, its off the charts. Maybe due to being in peri menopause. I have recently been Dx with a chronic rare blood cancer which means I can no longer take anti inflammatory meds - my lifeline.
A world of pain is now another aspect of my world - RHS butt pain constant. Never abdomen pain. You have prompted me to research more.
RueBlue3
I am just about to see a pain management specialist… lets see how that goes.
I also suggest taking a friend or family member to your appointment. Do not let them fob you off. First port of call is certainly a complaint to PALS (Patient Advice Liaison Dept). They are required to respond to your complaint.
Sadly there are some uneducated clinicians with not an caring bone in their bodies. It is a shame we have to fight, advocate and project manage our conditions.
listen to your body, you know it, do not let anyone tell you “its all in your head”. Of course there can be varying levels of depression due to living with chronic pain…..pain management clinician should actually know that.
absolutely still have the laparoscopy. You need to know either way, right?
Endometriosis & mental health problems, pretty much come as a package in my opinion. If we’re constantly in pain, we’re going to be feeling down.
Be brave. Hope your date for your laparoscopy comes soon & you can get some definite answers. That way you mental health may seem better because you have an answer & hopefully they can offer you support, guidance & solutions if it is endo.
Thank you so much, I feel really good that so many people disagree with that doctor. I was worried I was being delusional or something. Your words are very kind, take care too x
Honestly I don't know if I would trust a pain specialist unless they were a pelvic pain specialist, because otherwise they won't necessarily understand anything about endometriosis. It is possible to have nerve pain that is treated with antidepressant medication- I'm currently on amitriptyline for this exact reason- but when this was diagnosed at my pelvic pain clinic (which is linked to an endo specialist centre) they told me that this was a result of the endo pain, not a totally separate condition, and it just happens to be the case that a low dose of some antidepressants can also treat some kinds of pain. The pain isn't in your head and it doesn't just come out of nowhere. I would definitely check that your laparoscopy is still going ahead, and if possible ask for a second opinion from someone else.
Thank you for your advice! Yeah she wasn't a pelvic pain specialist, was just a general pain specialist so perhaps that's why my experience wasn't great.
I appreciate your kind words. It's really hard not to believe it when you're told it's all in your head, because after a 10th doctor or so dismisses you it begins to feel like you're going mad or being delusional for believing your pain is real.
I am currently attending a Chronic Pain Management Group and based on what I have learned there will try and explain why I think some doctors have been saying this kind of stuff to people with endo and why they are wrong ( there has been at least one other post similar to this).
It was explained to us that in chronic pain, defined as lasting more than six months, pain pathways to the brain can remain active even when there is no apparent physical cause. An extreme example would be phantom limb pain, from a limb that has actually been removed. The chemical changes in the nerves can be counteracted by drugs including some antidepressants.
The pain we experience does not always relate to the degree of actual injury/ illness. There is also evidence that mood affects our perception of pain.
I specifically asked if once chronic pain pathways are in place, was it the case that physical intervention eg surgery would not be effective and I was told this was not the case - the example was given of knee replacement surgery resulting in absence of knee pain, which is something I have experienced myself.
In no way should theories about chronic pain be interpreted as meaning chronic pain is no longer related to the original cause or able to be treated, or that it is caused by depression.
I fully agree that if you feel able you should report this doctor.
I hope the Gynae team you are seeing are more helpful and you get effective treatment.
I always say it’s best to investigate then have something evolve into something worse later. Pain management specialist are not gynaecologist and therefore shouldn’t be cancelling your appointment.
Ask to speak to your gynaecologist before anything gets cancelled. Make an appointment and take someone with you who can also ask questions on your behalf.
Stage 4 endo is horrific and I hate for anyone to have to go through this, so always push for answers.
You have had excellent advice here from others so I can't add much more apart from I have been a gynae staff nurse for many years before my health took over and stopped me practising. I have also had endometriosis from age 13 i'm now in my 50's. I had what used to be called minimal/mild endo and also had severe endo many years later..I can honestly say the "mild" endo was just as painful as the severe endo.
I cannot believe so-called specalists are still talking like this, honestly they said same to my godmother years ago and to me.
The gold standard for diagnosing endo is laparoscopy. Do not let anyone ever trivialise your pain and always take someone with you so you cannot be fobbed off.
I hope you get some answers soon, please be kind to yourself and take care.
I just replied to your post but I'm so annoyed on your behalf at the way you have been spoken to its just not on...but..I read some more of the responses and have to correct my earlier statement regarding the gold standard being a lap first, I didnt realise that scans are now being done prior to a lap. I am pleased to see this though as specialist scans will help guide the gynae team in planning surgery.
It sounds as if your gynae has arranged the extra specialists needed for your laparoscopy.
I too had dreadful pain with passing urine and had rectovaginal endo, plus endo pretty much everywhere, this was discovered by one of my lap procedures and then I was booked to have an excision lap which took several hours but helped loads and was done by my lovely endo specialist many years ago now.
Stay strong and remember you can do this we are all behind you.
It's hard to stand your ground when medical professionals are all telling you the opposite of what you wanted to hear, or creating barriers to get to the right diagnosis.
For about a year my GP was convinced I just had "IBS that I was refusing to manage properly at home" ... they diagnosed me officially and everything! But it took a GI specialist at the hospital to say "you do not have IBS and nothing about your condition is caused by the bowel" for my GP to start believing me.
It's scary that 1 person can change the course of your health journey, I'm sure you've had a lot of experience with people giving you different opinions on your condition.
I appreciate you telling me your story, it gives me hope that I'll get some answers for what's happening to me.
Your whole experience is just making me boil with rage. How dare she !!! Unfortunately it’s all too common. It’s also problematic in that really well qualified pain specialists who have a lot to offer us lose our trust by frankly denying and minimising endo. When oh when are they going to get this is a team effort not a solo performance ????? I really suggest you don’t cancel the lap especially as you are under Andrew Horne’s team.
Endo is shown to have significant effect on nerve function and can trigger central pain syndrome. It’s not a case of either or - it’s both and I would say it’s arrogant of the pain specialist to insist it maybe other than that when it’s clearly still a big question…. Unless they’ve suddenly developed crystal ball abilities. With your family history that’s even more reason to check it out. Part of the problem here is not your problem , but the medical model being applied - where things are compartmentalised into disconnected disorders rather than having a wholistic perspective. They end up fighting over who’s got diagnostic ownership not whether they are either right or helping the patient. This is an opinion only not a diagnosis. You can also have more than one issue !!! Keep on track and believe in yourself.
get a second opinion and ask for an mri scan- thatll show if you have:dont have it. You have every right to ask for a diff opinion- its ur body and ur pain!! demand it!
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