Hello, I’m looking for some advice and to see if anyone else has had a similar experience with the NHS (apologies, this is a long one!)
I’ve been suffering with Endo symptoms for around 6 years and have been passed from doctor to doctor. I’ve had my appendix removed (even though there was nothing wrong with it) been told it’s IBS and even just ‘bad period pains’. In October last year, I was referred to a gynaecologist by my GP who found a large heamorraghic cyst on my left ovary and referred me for further investigation for Endo.
Baring in mind that appointment was in October, the next available appointment was 5 months away in March 2020. The gyno prescribed me the combined pill to help me deal with the pain, although this hasn’t helped much and I am now suffering both my normal pain and side effects from this pill. I have just started a new job and am about to quit as I am really struggling to work full time with these symptoms.
I received a letter yesterday informing me that my March appointment has now been moved to JUNE. That means I would have waited 8 months from the initial appointment to be seen by a specialist. I can’t take this anymore, I am in agony everyday and just feel so exhausted. I am desperate for an answer so I can live my life the best I can. My only option really is to go private, which will be a huge strain on me financially. Has anyone else experienced anything similar or does anyone have any advice at all?
Thank you xx
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Mila26
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In a way this does give you some empowerment in guiding your onward journey. You can pay for an initial private appointment with an endo specialist of your choice that might only cost around £200 - £250 and then you can decide whether to wait it out on the NHS or go private for surgery if you do have the means, but it would be several thousands just for a diagnostic and more for treatment. The most important factor is that it is a consultant with a minimum of a 'special interest' in endo (so additional training) and if you have symptoms of severe disease a specialist in a centre. Going privately for an initial consult means you can see a specialist in a centre whether or not you would have fulfilled the referral criteria on the NHS.
I’m so sorry to hear you and going through this. This is starting to become a regular think for us women.
I was passed from Doctor to Doctor and I suffered a lot with my mental health due to this.
I was addicted into hospital for further tests and had a X-ray of which they told me I had a blockage in my colon. They gave me laxatives and sent me home.
I went back to the GP a due data after still in chronic pain and was referred for a ultra sound scan. I waited 4 weeks for this has it done then waited another 6 weeks for the results and it came back Normal.
These pains were getting really bad. I went back to my doctors and seen a lady GP and she referred me to see a gynaecologist🙏
I was told by my gynaecologist after I had my MRI scan that it looks like I might have stage 4 endometriosis and this might result in my having a stoma bag. My Surgery date was October 2019 and I was struggling to come to turns with what I had been told and my mental health became worse. I received a letter from the hospital today my Surgery was getting put back to November 2019.
I had enough!! I tried taking my own life because I didn’t feel like I was getting anywhere and the pain was getting worse.
My mum, sister and partner all pushed for my surgery not to be moved and explained what impact this was having on my life.
I then was told I had a date and my surgery was booked in 23rd October 2019.
I am not not in as much pain, was diagnosed with stage 2 and no stoma bag.
I thank my mum, sister and specially my partner and stepping in because they saved my life really.
Keep fighting for answers and never give up. Take people with you to appointments to back you up.
I really do hope you get the answers you need. Xxx
Hello, thank you so much for taking the time to reply.
Your story has broken my heart, I am so so sorry you have had to go through that. I hope that you are now on the road to recovery and everything is as good as it can be for you ❤️ I am so pleased your symptoms were relieved and that you had such an amazing network to help you through this.
I just feel so frustrated, I can’t make it any more clear to the doctors how much of an impact this is having on my life and I just feel like I’m being forced into going private. Of course my health is more important than any amount of money, but I just feel sad that I have to do this.
I will 100% keep going! Thank you for listening to me xx
I truly do feel for you as I read about your horrible battle to find relief from your suffering.
My first suggestion would be to go back to your GP and ask for pain relief. There are a number of options that might be available for you depending on your daily and or cycle based pain (it can be different for different people). Personally I started with Mefenamic Acid (which can also help some with bleeding symptoms). This was not enough on its own for either symptom and I later had Tramadol added for pain and further on Tranexamic Acid for bleeding symptoms. These were all prescribed via GP, and never altered by any of the Gynaecologists I have seen over the years. Despite difficulties with Gynecologist care on the NHS I have been lucky enough to have good support from the two female GPs I have seen regularly (changed in between when one left the surgery practice I am registered with). I know this isn't the case for everyone so ask to see a different GP in the meantime if you need to. In addition to the above medication I have 3 microwave heat bags for at home use. I found a wonderful seller on Etsy (in the UK) who makes a variety of shapes and styles, including flat ones that are divided into sections (the seller I use offers wheat and flaxseed - I find the flaxseed best), can make removable covers if you want and is happy to work with me when ever I make special requests. You may find stick on heat pads provide some relief when out and about. Long story short, do not put up with just suffering from the pain. Some find help exploring alternative methods like acupuncture and you can ask your surgery if the NHS cover this in your area.
As for waiting for appointments for Gynaecology, I hate to be negative but it is my own experience as well. One of my steps was to go through a hysteroscopy to rule out other issues. I had the hysteroscopy, chased results for 7 months for an appt was refused the results (my appt ended up with a student rather than my consultant) and told they were out of date and I needed another one. Without going through it step by step I had the next 2 cancelled on the day while waiting at hospital and after the third was discharged when they didn't find anything they were not already aware of, despite being promised an appt to discuss further investigation of Endo afterwards. At that point I was 4 years in and on my second NHS Gynaecologist team since my first GP referral to be checked for Endo. The first gynaecology team was way worse.
If you can afford a private consultant it appears, from the stories I have read here, that a lot of people have found a much faster path to getting a lap and diagnosis. But be aware that if you suffer from any conditions that might make this a more dangerous procedure for you (the lap) that they could potentially refuse you one, even though it is the only way to a certain diagnosis for endometriosis. There are many reasons this may be from high blood pressure, heart issues, apnea, heart condition, obesity, history of blood clots (example in legs, not blood clots in your period discharge), and more. I don't say this to dishearten you, just to make sure that IF you have other medical conditions that need to be considered that you might not get the result you hope for and I think it is only fair someone point it out for your consideration if you are considering paying to go private.
On the flip side I have heard stories of people having their appt and lap within 4-6 months under private care. If going private be sure and research for specialists in your area and Google for any reviews you may be able to find before committing yourself to a specific specialist. Also question wait times when calling the surgery.
I wish you so much luck in finding help with a diagnosis and relief from all of your symptoms, however this is best achieved for you. Every single one of us have our own story but I think that we can all agree that the suffering needs to end.
I am already on pain relief (mefenamic acid, tranexamic acid, tramadol) and I use heat pads, cbd oil, supplements, yoga for Endo plus regular exercise (when I can) and I follow a 0 refined sugar, no meat, no dairy diet. I am willing to try anything and everything!
I cannot afford private but I feel it is my only option if I want to get my life back and I feel sad about that. Us women should not have to be in this position and once I am diagnosed, I will do all in my power to stop this from happening to anyone else.
Thank you so much for your advice and I’m sorry to hear about your experience ❤️
I am in the same boat. A few years ago now my pains got worse and I went from doctor to doctor. I thought it was Gallstones. I had scans and nope nothing there. Doctor told me it’s probably just IBS and to keep a food diary and that was it. Come September 2019 I was in agony and pushed to get an ultrasound. I had an ultrasound in October 2019 and they found a 10cm cyst growing in my right ovary and told me it was endo. I had never heard of endometriosis before I was a bit shocked. They told me I would have keyhole surgery within 4 months.
I manage a restaurant and come November I got signed off work due to the pain. I am now doing part time hours. It takes over your life, I am tired all the time and frustrated I can’t get on wry day to day tasks.
My surgery is was due Mid February/next month, but I have now been told I won’t be getting my surgery until May 2020 earliest. So that’s 7 months waiting. I’ve been told to take the Gnrh injection to stop the cyst growing but I am not sure I want to take hormone injections. For some women it doesn’t stop their cysts growing so why risk screwing up your hormones if it doesn’t make any difference?
Anyway, I know your frustration. I am looking at going private too. The costs are crazy. I’m in the middle of trying to buy our first house and this stupid cyst is causing so much damage on my finances, work, social and mental health. I’m just tired all the time.
Go back to your local GP and push to get an emergency appointment if possible and you should get to see someone within a few weeks xx 🎗
It’s so frustrating, isn’t it? Sorry that you’re going through the same thing. I am also hesitant to take anything that will mess with my hormones. I’m trying to look for more naturalistic options that won’t give me any side effects or cause other symptoms.
I have already been to my GP who has explained that there is nothing that they can do. I will try again with a different GP and see what they say, it’s worth a try.
It has impacted on every aspect of my life - physically, mentally, financially, my relationship, my career. I can’t wait for this to all be over.
Thanks so much for your advice and I hope everything gets sorted for you quickly ❤️
Hi all, I just thought I would leave a comment to update everyone on my situation.
Since posting, I decided to take the steps to arrange a private consultation with an endometriosis specialists. Whilst initially expensive, the advice and care of this doctor has been invaluable.
After talking through my symptoms and concerns, the specialist has referred me for further scans via the nhs, prompting my gp to arrange a follow up appointment and has also placed me in the care of an nhs endometriosis specialist nurse, without further charge. I feel like I have finally been listened to and feel like my diagnosis and treatment is getting somewhere, so that I can take control and get my life back.
If anyone has been thinking about taking this route with a private consultation, I would highly recommend it. I have kept my nhs appointment in June, although I feel much more prepared and have been given further pain management advice, which I have not previously received with any other doctor.
I hope that you are all well and if you need any advice or any further information, I would be happy to help 😊
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