Post surgery pain and very little help from NHS

[Alouette]

Hi all,

Hope everyone is well!

A bit of background about me, I have had extremely painful periods since age 13 which have increasingly become more and more painful, after trying the deppo injection, the implant, the pill continuous and with break, the mirena I was at my tethers end, mefenamic and tranexamic acid for pain etc to no avail.

In November last year I went for a lap for diagnosis and treatment of endo, since then I have been in agony on a daily basis, I am about to lose my job as have been unable to return to work, and have been in and out of A&E when the pain hits all time highs to be sent home with no help. I had my appointment today with my consultant to be told let's just try the pill again (because that worked so well the past 3 times I tried!)!!! I am close to putting a knife through my stomach in frustration, it seems so rediculous that no-one can help me!!! I am on pretty strong painkillers daily which come with a lovely possibility of addiction to make life better!

I have just booked an apt with a private consultant, which I CANNOT afford in reality, but I'm at a loss of what to do next!!! At 25 they refuse to let me trial zoladex and will not consider the idea of a hysterectomy. Has anyone else had worse and continuous pain after lap, and can anyone help with ideas to get the pain down? I use heat treatment, very strong painkillers, and morphine doesn't even dull the pain when in A&E.

Thanks in advance.

Ally

[Tboag]

Hi, sorry to hear your no better after your lap, do you know where they found your endo, general gyne for often miss endo, you should ask for a referral to a specialist BSGE centre,

Good luck

Xx

[Scooteeder]

Hi,

Just read your post, and I can really empathise. I'm sorry to hear you remain in pain, and that you are having such a hard time.

Please don't panic, and don't give up. YOU know your body best - you live with it every day! Pain and other unpleasant symptoms are there to let us know that something is NOT right, so stick to your guns and request answers.

Some of the replies that you have already received include some pretty useful, good information. What I can add is this...

It sounds to me like you have tried many of the common treatments for gynae problems - pill, Mirena, Mefenamic acid, Tranexemic acid... I've been through all of those myself. True, they may offer short term relief, but they only mask symptoms temporarily. They are not a way to get rid of Endo.

You say that you have had a lap surgery. What sort was this? Just a diagnostic lap, or was Endo actually removed? Also, are you under a specialist, or just a basic Gynae? I ask these questions because the answers are all important. I have Endo myself, which took over 9 years to correctly diagnose. Many basic Gynaes do not know much about Endo, so they can miss it, incorrectly diagnose you, or fail to provide appropriate treatment. This happened to me - I was misdiagnosed several times (with IBS, stress and polycystic ovaries) before getting correctly told I had Endo. All of this happened under a basic Gynae, who was probably out of his depth. My first lap was also under a basic Gynae, and although he lasered away superficial Endo, he missed the fact that I also had severe Deep Infiltrating Endo in my uterosacral ligaments. As a result, I remained in bad pain even after surgery.

I looked up a specialist online. There is an organisation called the BSGE which accredits UK Endo specialists. There is a list of specialist centres online:

bsge.org.uk/ec-BSGE-accredited-centres.php

If this link does not work, please be assured that it IS correct (and type it into a search engine) because I posted it previously and it DID work. It seems today I may be having some trouble. Don't know what's gone wrong!

Anyway, after going to a specialist, I had a further 3 surgeries, including radical excision to remove the Deep Infiltrating Endo. This type of Endo is often very difficult to deal with, because its lesions can be large and nodular. Also, they do not just grow on the surface of the pelvic wall or pelvic organs, they can grow into these structures, or even totally INSIDE them. My own Endo was actually nodular, and growing INSIDE my uterosacral ligament! That is why it can get missed. Only Endo specialist surgeons are usually competent enough to effectively remove this type of Endo. It is important that it does get removed, because Deep Infiltrating Endo can cause considerable pain, and also damage to structures within your pelvis where it grows.

I would advise that you seek referral to a specialist and that once there, you request an MRI scan. This is because the MRI scan is a non-invasive way to look at what is going on inside your pelvis and abdomen. Endo, even Deep Infiltrating, does show up on MRI scans - so if this is the cause of your continued pain, it will show. If Endo is not still present, then at least an MRI will show if anything else is going on that may cause pain and inflammation. My own recent MRI scan showed that I have damage to a joint at the base of my spine, and nerve damage, which is likely causing me ongoing pain.

So, apologies for the long post... but don't give up. It may well be that with specialist care, things can be done to ease your problems, AND they need not be anything like as severe as hysterectomy. Read up on Endo and various treatments - there are LOTS of options out there, so get clued-up.

endometriosis.org.uk

endometriosis-uk.org

endometriosisexplained.com

endo-resolved.com

... are all good websites, with lots of info on symptoms and treatment.

Also, keep a symptoms diary to record when and where symptoms occur, plus how they make you feel. Take this to appointments with you as it may help you and your doctor spot patterns to your illness. And always prepare for appointments in advance - make a list of questions you need answered so you won't forget on the day; take someone with you as moral support...

I'm hoping that there is something here that may help you - or anyone else who reads this. Good luck, and wishing you all the best. Keep fighting.

Best wishes, E. x

[Alouette]

Hi there,

Sorry for the delay in reply, had a bad few days. Thank you so much for your responses, it feels so good to finally find people that understand what I am going through!

I had my lap for diagnosis was completed by general gynae and removal of superficial endo on my left uterosacral and left ovarian fossae, nothing found on the right, though this does coincide with my pain being predominantly left sided.

Thanks again so much for your advise and words of support it means so much, I have now booked my private apt with an endo specialist in one of the centres you have advised in Brighton, Dr English, who has extensive experience with the treatment of endo, he works for the NHS also, so hoping this apt will get the ball rolling as I definitely cannot afford any further private treatment.

The symptoms diary is a great idea, I will start doing this straight away! I am also going to further change my diet from healthy to super healthy to see if this has any effect.

Thanks again and best wishes to you all!

Ally x