Broken and Lost - awaiting urgent hysterectomy at 34

[Endo_Jaded]

Today broke me!! My surgeon phoned for an over the phone consult (thanks covid) if you know my story I’ve been waiting since 2017 for a hysterectomy due to stage 4 or as I call it decimated stage Endo. I haven’t even met him in person since I was ‘urgently’ referred Nov 19! And he’s called twice both times two hours late and barley listened to me.

It’s 10mm into the bowel, I’m fused, twisted, connected, inflamed, adhesions everywhere, fibroids… you name it I got it!!

Northern Ireland stinks for healthcare… I’ve been told today even though my life’s pretty much all about pain and suffering with Endo and all the horrifying symptoms that ensues! I have to wait another 12 months to get surgery that now needs to be a laparotomy since it’s so severe and a colorectal surgeon needs to be present.

He told me that he has to do all the little surgeries in smaller hospitals first and then the bigger ones in the bigger hospital!!

He’s private at two different hospitals and NHS at one (mine)!

Does anyone here in NI have an email address or contact for other surgeons NHS that I could find out their wait lists please?

My Fallopian tube is twice the size filled with blood, I’ve an endometrioma and bowel issues, bladder, daily pain 5-8 and on a daily morphine patch with codeine! My poor family have suffered too much and so have I! I think I deserve surgery to save my bones, bowel, bladder, life!!

I think the surgeon has discriminated against me because I asked for a hysterectomy- he hasn’t once tried to talk to me about other options, or getting me in, he just wants me to spend 18 months on GNRH that I don’t want to be on, but without that I can’t even be a half mum!! I’m lucky my kids are older or I’d be hopeless!

I’ve a solicitor already involved due to medical negligence

But right now I need hope, hope that there may be a surgeon who sees patients before pound signs, who wants to truly help and can see the urgency of my case. (I’m not saying we all aren’t urgent or need help, but I haven’t had any of my Endo removed or any proper surgery since they discovered the endometrioma in 2017 and I’ve suffered 24 years being slapped on the nose and sent away. I had to pay for my own MRI and that showed how serious it all is and the private doctor was horrified and suggested this would make the surgeon act… but it did not.

Also discharge bleeding with GNRH 7 months in is this normal?

I’m so broken and lost all hope now! I can’t return to work, I’ve been out for so long I’ve skill fade, my law degree was pointless and no employer would understand I need to work from home 100% to be productive and not require absences!

** does anyone else think it stinks that a surgeon can be private and nhs at the same time, and if you had the money he’d make the time, and someone with the £15K just cost you time and possibly your bowel?

Love and kisses to all you EndoWarriors

[dodgeviperdiva]

hun I'm so sorry to hear that ur suffering 🙁 I'm getting no where with the hospital too unfortunately I don't have any answers to ur question just thought I would let you know someone was thinking about u x if you fancy a rant I'm more than happy to listen 😂 I'm gonna have a good rant myself soon xxx

[SK2021]

Hey I’m so sorry to hear you’re suffering. Stay strong ❤️ You’re not in this alone. I am also not getting anywhere with my specialist but tbh I don’t think covid is making things any easier. I was put on the GNRH injections for three months but I bled the whole time nothing seems to be working ☹️! Hope things get better for us both soon x

[Pinkmice]

Sweetheart

With everything happening no wonder you are lost - Been and in most things have had

the same journey - had to have the operation when 30 - endo effects so many elements

of a woman's life.

Hospital even going private does not take away the emotion pain. Been to brink like you

but you need the support from your family what ever you decide to do.

Look after yourself- if you decide to go ahead with any more procedures/operations

as they cause more scar tissue which sticks - I still have had problems with bladder bowels

health issues which distress me- one step at a time.

During this covid plus going back years- approx time period you mention- alot of shared

emotions - wish I could give you a big hug.

Stay safe -

[Endo_Jaded in reply to Pinkmice]

Thank you all for your kind words, and thank you for yours too.

Unfortunately, they haven’t bothered to do surgery or even refer me to gynae I’ve always just had pain and heavy periods/ IBS and been handed pills to shut me up, rather than investigate.

The surgery in 2019 lasted 33 mins because the surgeon was way to inexperienced to deal with it. And he took none away. He in his words freed some adhesions (which grew back in 30 days.) (I had an MRI) It was that bad.

Sadly, hysterectomy is all I have for some freedom. Due to Endo I believe I have developed worse allergies, Hashimoto’s Thyrioditis, Type 2 or 1.5 diabetes and worsening bowel/bladder issues and the leg pain is intense. I don’t think Hysterectomy will cure me, but I’m hoping the lack of hormone will be a start, alongside the lack of bleeding, nausea and vomiting that ensues.

I’m so sorry you too have suffered like this, I hate that this is a women’s disease and we seem to have lost our own right in society to deserve dedicated services and understanding. If it’s women’s only it doesn’t seem to get the spot light unless negatively.. I don’t hate men or blame them all but this is a male orientated field for a female only disease. It would be nice if it was just women for women, but even then I guess I’m living in a dream world were funding and research actually get funnelled to it.

I began my period at 7.5 years old and then again at 8 it was more regular! I was the only 9 year old kept in class at break and lunch due to period pains with a cup of tea and pain killers and still no one thought this was unusual…

If you want to talk more feel free to DM me. It’s nice to have other women holding each other up and supporting each other.

I also run a endo group privately on the signal app with several other girls. You’re (all) more than welcome to join - it is just a group chat where we message each other collectively or I have everyone single too so I’d message them now and again to check in. They span all over the UK and one in Pennsylvania (soon to be Texas)

Thank you again for your kind words. Xx

[Pinkmice in reply to Endo_Jaded]

Hi

Sweetheart having the op may bring you some relief - note that where every bit

of tissue that can go elsewhere still can cause problems.

Mine has been on kidneys/bowel so the scar tissue still sticks other organs - when

you finally are able to get with a consultant hope he is trained to remove any

other tissue which they can spot with-in - at the time.

Woman with this endo have to suffer for years even before its found- which in

this day and age seems to be wrong.

Hope you are keeping well, one thing at a time,one step at a time as stress adds

another pressure you do not need at the moment.

Big Hug

[Endo_Jaded]

Thank you

[Macdunc29]

Hi there,I am so sorry to hear of your problems with your health service.

I am in in the same position medically (extensive stage 4, 6 and 5 cm endometriomas kissing ovaries and stuck to back of uterus which has moved position and twisted), but just found out about my endo last week, answers a lot of questions. Thank fully the team at my local hospital recognised how far developed my case was and and admitted to me that i would need a very specialist surgical team. My case was discussed at the multi- disciplinary meeting where the top surgeons at my local hospitals discuss the transfer of care between them for the most complex cases. I am still awaiting news of the plan but i can't believe the difference in care compared to how you are suffering.

It must be so awful to know how bad things are and yet no one feels the need to help you.

Thinking of you and sending big hugs in support

[Endo_Jaded in reply to Macdunc29]

Thank you for your kind words. It helps to know that others are getting the appropriate care. I have a solicitor on the case since I’ve been so understanding until this point and feel like my understanding should never have been needed in that context. They should have as you said convened and prepared a plan. They don’t care and just want to do a hysterectomy so therefore I’m not a fertility case so don’t seem to be put on there need to operate immediately list. But hearing others good treatment makes me feel better for them, angrier for me and prepares me that the trust in Northern Ireland have let me down medically not just now but my whole life!

I hope you plan is well constructed and you can get relief from this awful disease xx