My sister saw one of the GPs at her surgery a few days ago because she believes she may have endometriosis. At the appointment, the doctor she saw (I'll call them Dr. Jane), asked her a few questions about her symptoms. After my sister answered them all, Dr. Jane said that it did sound like my sister might have endometriosis, but that there was no cure for the condition and that there wasn't really anything she could do for her. She said that all my sister could do was try and manage the pain. She said she could prescribe my sister naproxen but that it wouldn't really be any better than ibuprofen that she could buy at any pharmacy.
My sister and I were shocked. We have both read a lot about endometriosis and know that simply "managing the pain" is not a valid treatment for this condition. It is my understanding that if nothing is done to treat the endometriosis it will only get worse and eventually start destroying other organs.
I was quite annoyed with Dr. Jane, and I wasn't about to leave the appointment with nothing to show for it. So I said to her, that my sister did not know if she even had endometriosis and wanted to know if she had it. The doctor then admitted she could refer my sister to see a gynecologist. My sister said she would like a referral, and so the doctor did eventually give her one.
But honestly, I keep thinking about this appointment. I am appalled at the way my sister was treated and I am concerned that other women who don't know anything about endometriosis will go to see Dr. Jane and be told all they can do is manage their pain. I am thinking about writing a complaint to the surgery about it, but I am not sure.
What do you think I should do?
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Twin4Life
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Absolutely complain. They need to learn to proactively improve the time it takes to A) get diagnosis and B) get treatment.
I was one of those back and forth to my GP, for seven years where they fobbed me off with cocodamol. I’m now in an absolute state, multiple organs stuck together, poor quality of life. No children, no possibility of even trying for them.
How fantastic that you sister has you there supporting her. Sadly as she was the patient they may not actually accept any complaint unless it is your sister herself that complains. They may say as it was her appointment it has to be her that complains. Gd on you for being a great supportive sister.
Absolutely complain if you have the energy and capacity to. You can reference the NICE guidelines for endometriosis, which will clearly state the GP was wrong. This will help back up your complaint.
I second this. I printed out the guidelines as my first gynae consultant was also like this “the only treatment is the coil”. Point blank refused to consider anything else. So I directed her attention to the guidelines which helped jog her memory… 🙄
Yes I would definitely complain, even just to ensure they read up on it to give better advice next time.
However I just wanted to clarify that she’s not entirely wrong, there is no cure and it is about pain management as she said, it’s just that there are other treatments as part of this management such as surgery and hormonal medications. Believe it or not I was also told by an nhs endometriosis consultant that I could either have surgery again to remove every inch of it or do nothing which also turned out to be rubbish as I was then prescribed a medication by a private consultant and have since learned that surgery is about quality of life not cure so you may decide not to remove endo from for example your bowel when there are risks involved in this if you have no symptoms.
It’s a very complicated picture and you’re going to get conflicting opinions along the way sadly but I definitely agree it would be helpful to complain about the gp. Sadly in my experience they know next to nothing about this condition.
Your sister is a lucky gal to have you advocating for her. Definitely complain, it will help the doctor realise that she was off the mark. What about referrals for an ultrasound or MRI to help support the diagnosis, or even a mention of a laparoscopy?!!? Sounds like she didn’t do any of that. Crazy that you had to remind the doctor that your sister doesn't actually have a diagnosis yet. I would suggest writing the complaint as if it were from your sister (and you) just to ensure they take it seriously as she was technically the patient. You rock! Xx
This is something I feel very strongly about having been fobbed off and lied to by medical professionals for 15 years. Only taken seriously and diagnosed when I couldn’t get pregnant by which time stage 4 Endo had obliterated my insides causing irreversible damage leaving me infertile and in constant pain. I will never forgive all those doctors, had they taken action sooner my life would likely be very different now.
your sisters doctor obviously needs far more training on Endometriosis.
I know it’s bad we have to but if your sister can afford £200 for a private consultation with a BSGE registered consultant, it’s well worth it. The consultant can then do any further investigations and treatments on the NHS. It’s just a way of significantly fast tracking the process.
Or some employers offer private health insurance which is worth exploring too.
Best wishes to you and your sister, please feel free to message me anytime I’m more than happy to help. ❤️
Yes please do complain, every complaint they receive about gaslighting endometriosis patients counts. Contact PALs! My GPs gaslit me for 10 years, complaining got me infront of an endo surgeon and my endo was finally diagnosed in my 30s.
This is why I always try and have someone in with me for certain appointments because sometimes I've gone away thinking was I really told that. I would complain to the practise manager. I always say to my family what happens to those who never question drs and took everything as gospel.
I also think you are completely right to complain about the doctor. We see here with other women how many times doctors here just dismiss us and tell that there is nothing to do. Firstly we must go to gyno, but there is another issue - not each gyno can spot endometr and grneral gyno don’t have the enough equipment as ultrasound as well as knowledge to look for endometriosis in other parts of abdoment as endometriosis might be on the ovaries, on the bowels, bladder, kidneys, it spreads out and only specialised doctors can actually find it(!). There are treatments like hormonal, dienogest, there is laparoscopy for large endometriomas and adhesions - basically there is something more than only pain management.
I can only suggest to ask for referral to the previously researched hospital that has endometrial specialists, there are some hospitals with departments looking after this condition so I can just strongly suggest to look for one and seek referral to that exact place. Also - if you can afford - private gyno. I wouldn’t ever have known about my endometriosis if not the private gynecologist who found endometriomas cysts on my ovaries - nobody in uk has ever done a pelvic us on me (ONLY i was referred for scan after i brought my results back from private gynecologyst from Poland!)… the level of care for this condition is literally poor and everyone should do everything to push and ask for help, chase, chase and chase once again otherwise we’re ignored.
While the Dr is absolutely correct in that endo has no cure new research has come about and surgery with the removal of endo can cause more issues depending on the type of endo however this is just a theory at the moment.
That being said having the surgery is the only definitive way of getting the diagnosis and biopsy to tell the type of endo you have which will help with what treatment options you should take.
Endometriosis treatment is and has previously always been management of symptoms and that is it.
Specific endo without surgical prevention can cause more issues. However superficial endo if removed can cause nerve pain a recent study has found.
I would complain however as not immediately referring you on and dismissing it when naproxen is not really a good form of long term treatment and if put on it you should also take omoprezol to reduce known issues with long term naproxen usage. Is very worrying.
Endo has such a wide range of symptoms that could be something that is not endo.
People I saw or appointments before I got my endo specialist and 1st lap
Urologist
Oncologist
General surgery
Colonoscopy
Mri
Ct
Ultrasound
Gynae
Full blood panel
Psychiatrist
If I hadn't been referred when I had I would of also possibly had cervical cancer. As they found cin 3 cells of the cancerous strain.
A 4cm cyst on my ovary that was an endo cyst.
Now I'm glad it wasn't anything too serious and it was all caught in time but if it isn't endo and it is something else that is in a treatable stage, but you haven't been taken seriously because oh its probably just endo here take this without doing any tests is medical negligence. Mainly Because that treatment could make things worse if it's something else.
Getting a full diagnosis also opens a few doors for example...
Access to mental health.
Pain management.
Physiotherapy that is related to endo as it can affect your pelvic floor that creates more pain.
Direct contact to an endo specialist team. This way if you have new symptoms you can check if its due to the treatment plan or endo related keeping your mind at ease.
I'm not saying any of this to scare you, just making sure your aware of information that is currently available, and my experience.
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How Can I convince the doctor to give me a scan?
Gynaecologist appointment today I officially give up just need some support right now 😔😔😔😔
Thinking about giving up on diagnosis 
