NHS & Private Specialist fobbed me off

[ZombieHunter99]

So, I have had ongoing issues for 3 years!

I have had MRI scans, Transvaginal Ultrasound, Ultrasound, Laparoscopy and multiple A&E trips due to severe pain - each time I am told that everything is normal and it is just a pain management thing. My pain is every day in my lower right abdomen (over the ovary) and down my right leg at the front.

I feel like this is Endometriosis and I know where the pain is coming from in my body! But no one is listening!

My periods have been so bad the last 2 months I've ended up in A&E and now I am petrified for my period next week in case I cannot come into work AGAIN!

Yet the private consultant I paid for just told me that the NHS has been thorough and there's nothing more they can do - they have said to just take Mebeverine every day for IBS, go on the depo injection or double up the pill (which makes me constantly on my period) and HRT alongside...

I feel like there's nothing wrong with me and maybe I'm just making all of this up!!! I don't know what to do next ! I feel so lost !!!

Anyone had similar experiences?

Eve x

[CakeGirly]

Hi Eve, this sounds really hard. It has taken me 10 years of going to the doctor's to get diagnosis for my pelvic pain. I would recommend visiting the endometriosis UK website and use their symptoms checker. This can help generate a letter for GP. From this I would use chat GPT to help add to the letter saying you are interested in seeing a gynaecology specialist (if you are interested in surgery). MRI scans and ultrasounds do not always detect endometriosis which is why laproscopy is the gold standard for treatment. If your GP refuses then I would go through PALS (patient advise liaison service) and explain that you feel you aren't being taken seriously. The waiting lists vary across the UK for treatment but you can be referred to other trusts which may have shorter waiting lists. For example in my trust I saw the specialist in October for the first time, and had my surgery this week (April). Please be kind to yourself and remember your pain and feelings are valid.

[Sunset-lady]

Have you accessed your surgery notes? I would ask to see all my medical notes to see if they mention anything to do with endometriosis. They may have found superficial endometriosis. We know that the amount of endo does not correlate with pain experienced so you could have very little endo but be in a lot of pain or you could be like I was with stage 4 non progressive endo and no pain. Definitely worth finding out.

[RedCat24]

Hi

I wasn't constantly fobbed off with bowels with NHS in and out of hospital and I knew it wasn't bowels. I went private with a pelvic pain specialist who also told me the same and told me to do fodmap diet. I spent another year fighting the gynaes it was there department to investigate but they were having none of it, bowels got explored nothing, i then did some research and went private elsewhere again with another pelvic pain specialist who was a cancer consultant and had a specialist interest in endo... I had surgery with him and he found endo. Don't give up, you will find somewhere who will listen and take you seriously

[ZombieHunter99 in reply to RedCat24]

It's absolutely ridiculous. Thank you so much! I will do this. Xx

[MontsJ in reply to RedCat24]

RedCat24 out of interest did your pain improve after surgery?

[RedCat24 in reply to MontsJ]

Hi, it slightly improved for about 3 month then I had all plus new symptoms, so overall no surgery didn't help! I had ablation tho and it's better to have excision. I'm under a specialist now and had a MRI just over a week ago to see if anything shows x

[ZombieHunter99 in reply to MontsJ]

Not at all. But then again they didn't take anything out they just had a look.

[635703]

I’m very sad to hear about your traumatic experiences. Your pain is real and valid and I believe you.

bsge.org.uk/centre/category...

Not all Endo Drs are equal. You may have done this but the above link can help you find a skilled and experienced surgeon. I was also curious that the private Dr did not contradict the NHS Dr. This is like probably Dr code as they do tend to stick together. Maybe they play golf together 🙄

I digress. You can ask for a second opinion in The NHS and name the Next Endo Specialist and hospital they’re based at. If it’s not the same hospital. Another hospital will likely do all the tests again as their IT systems don’t talk to each other. Which is utterly cuckoo.

I think this could be a good place to start for you but it’s going to take time.

A short term plan is to try a gnhr analogue injection with HRT for pain management. Immediately ask for help to manage the pain. Amitriptalyne at 10-150mgs is a nerve blocker. Both of these helped my nerve pain down my right leg and stopped my period. Combined this held me together until I got my surgery. It could be an option for you if you’re desperate. We are limited with symptom management tricks, as you know.

To reassure you: they could of missed something because they’re not very very experienced with complex cases.

So let’s see what happens.

About work: this is stressful and having to be off is really difficult. I have been through this a few times. All I can say is find a stress management thing that works for you. If you have one, add some others.

I hope this helps and we are just a message away. My inbox is open.

Take good care lovely and a hug from me 🫂

[ZombieHunter99 in reply to 635703]

Thank you so so much! Xxx

[Oceanmaid]

Hi Eve,

It sounds like you’re really going through it. I’m sorry that you’ve not felt heard and haven’t got the answers you need. It is really tough when medical professionals say all you tests are normal. I’ve had a similar situation myself. I’m on the waiting list for diagnostic laparoscopy. I’ve struggled for years but get served bone pain in my legs and very painful periods and ovulation, fatigue ect. I was recently told it could be ibs and have been on similar medications as you. It’s really hard when you just don’t know exactly what is going on.

One thing I have read is that Endo isn’t always found during laparoscopy. When I had the transvaginal ultrasound they said that Endo doesn’t always show up on ultrasound scans.

I have found the best and only thing which helps with the bone pain is being in a hot bath or running over hot water from the shower. I also use Epsom salts all the time in the bath which can help with pain. I’ve recently invested in a health journal which I find therapeutic to fill out each day and is what made me realise the leg pain was actually linked to my cycle and not chronic fatigue which has been mentioned by doctors.

There has been a recent study on dietary changes and improved symptoms recently which is worth a read. Basically cutting out caffeine, alcohol, dairy and gluten has shown to help some Endo suffers. Anything is worth a go!

There is a book I always see recommended on here also called : heal Endo (I’ve just ordered a copy)

Hope this is of some help to you and hope you get some answers soon it’s very tough trying to navigate it all with work life ect ect. Don’t give up!

X