No hope: I am beyond devastated... - Endometriosis UK

Endometriosis UK
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No hope

DAML8
DAML8

I am beyond devastated, disheartened and upset... I had my post op telephone appointment today, from the excision surgery I had back in Feb. All my endo pains returned almost straight away/never really left (just like my previous 4-5 ablation surgeries)

My consultant (apparently one of the most sort after endo specialists in the UK) has basically said he can’t do anymore for me, says I cannot/should not have anymore surgery in the future as it’ll make no difference to me, that my pains might be ‘phantom’ pains! (Major insult!!) and I just have to ‘learn to live with/manage the pain’ and that he is now discharging me.

I waited 18 (long and painful) months to see him and get my surgery and I am no better off and the pain is still just as bad (if not worse!) than it has been for the last 5 years.

They would not let an animal suffer in such pain all day, everyday...so why is it ok to tell me to ‘just learn to live with it’. I have no quality of life...and now no hope of ever regaining any sort of life! 😢

29 Replies
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I am so sorry. This is 100% not ok. Please know your pains aren’t phantom and the ablation surgeries he keeps doing are making things worse not better. It’s on him. His ego is in the way. The gold standard for endometriosis surgery is excision. It requires specialist skill. It doesn’t cure Endo - but it can provide you with up to 5 years of relief or symptom improvement, in the best case scenario.

I don’t know where you live but in Australia, where I am, we have to pay privately to get endo surgery with specialist excision endo specialists. It is ridiculous and unfair that we have to pay but that’s another part of this whole shitty disease. Is there an option for you to do this?

There may also be other things you can try to find some small improvements. Often it’s the combo of things that might improve symptoms by 20%. Diet, pelvic physio, acupuncture, medications, magnesium, etc.

It’s absolutely ok to feel like there’s no hope. I’ve had so many dark moments. Just don’t give up permanently. Try again tomorrow.

DAML8
DAML8
in reply to Ollie2512

I know they are not phantom but he was having none of it. Basically because he doesn’t know whats causing the pain so soon after surgery he just said it must be phantom, so insulting! I always get told I should get around 5 yrs pain free but the longest i have ever had after surgery was 6-8 weeks. It always seems to return so quickly (or never leave) and every consultant discharges me straight after surgery and i have to start from square 1 again everytime! And everytime they open me up again they find more! x

Ollie2512
Ollie2512
in reply to DAML8

It’s not your fault. Ablation surgery is negligent care for endometriosis patients. Given what they are doing to you, the only outcome you can expect is more pain, more adhesions and no relief.

I’m so sorry to read this, I sought a second opinion as my previous consultant wanted to treat me conservatively despite being in so much pain and discomfort. I have had two consultants over past 14 years and 4 surgeries and it didn’t cross my mind to find someone else. Definitely worth a try. Hope you have a better day today. Take care.

Yes my husband wants me to get a second opinion, he can’t believe they are just happy to leave me this way.

Ollie2512
Ollie2512
in reply to DAML8

What do you want to do?

DAML8
DAML8
in reply to Ollie2512

I want a second opinion too. I can’t believe he’s just willing to leave me in this pain without even trying to investigate further

What is referred to as phantom pain is very real - it is neuropathic pain and is the same sort of pain as might be felt after a limb is removed but the sensation is still there. After decades of pain the body develops all sorts of pain generators that are perhaps consequences of an original source, that might have been endo inflammation, but which can develop as independent causes of pain. An example is pelvic floor tension which can be excruciating like cramp in the pelvis. The body learns over time to tense in response to pain and the muscles have to be untrained. This can be a long process - excision after so many years of multiple previous surgeries is not always going to cure the pain in the short term. Have you been referred to the pain management team? In any event if it was a complex excision you are usually advised to give a good 6 months to see it if has been effective.

If it was severe endo then assuming it was done in a specialist centre on the NHS they can't discharge you at 3 months - you stay on the books for 6 months and they then should follow you through for 2 years after surgery.

I run a UK guidance group that helps women access appropriate care. We have many women having problems still after hysterectomy/oophorectomy. We can discuss surgeons on there and look at your notes - if you would like to join send me a message. x

Have you had an MRI to see if it’s deep endo?

DAML8
DAML8
in reply to Moon_maiden

Yes, it never shows up on scans x

Moon_maiden
Moon_maiden
in reply to DAML8

Did endo show on the MRI in the bowel or other organs?

Before you see anyone else, ask for a copy of your records so you can see what’s been put down. It’s free of charge (I’m assuming you’re UK on this).

This way you’ll have a record to show a consultant as well.

I still had pain after lap, currently having other tests organised by GP to make sure there’s nothing else. Haven’t had MRI yet, it will be on the to do list.

DAML8
DAML8
in reply to Moon_maiden

No nothing showed up on any scans but when he opened me up he said i had loads and it had spread to bowels, bladder, intestines and liver.

Thats a good idea, yes i am in the UK. Who do I need to ask for my records?

Anastasia17
Anastasia17
in reply to DAML8

Hi. Be aware that under the GDPR rules, you should not have to pay to get your medical records. Some GP surgery will ask for payment, in that case you you quote to them the GDPR rules. Also, for the hospital medical records, ask that the copy of the photos taken during surgery be copied in colour, as often, they will send you a black and white copy and the endo can't be see. You are entitled to ask for a 2nd opinion. I found that CBD tablets helped relax my pain and myself after lap. Good luck.

DAML8
DAML8
in reply to Anastasia17

That’s really helpful, thank you!

If it’s the hospital there should be a link on their website. There will be an email or link to an online form.

If you want GP records as well, give them a call, they normally have a form to fill in.

DAML8
DAML8
in reply to Moon_maiden

Great i have just emailed the hospital and i will call my gp in the week. Thank you so much for your help and advice x

How are you doing this morning?

DAML8
DAML8
in reply to 3caramel7

Still in lots of pain and not been sleeping but I’m ok..thank you for asking :)

Its not over yet. Are you still with the pain team? Are you under the gastro team. Don't give up yet. We have your back.

DAML8
DAML8
in reply to 3caramel7

I have my first (telephone) appointment with a pain specialist on Wednesday so I’ve got everything crossed that he will help me. Yes I’ve had all gastro checks done.

What you need is physio who specializes in pain. An endo one is rare. But alot of us have found a great deal of relief from seeing one

I wish you well and all the best.

DAML8
DAML8
in reply to 3caramel7

Oh right, that’s interesting. I will get googling. Thank you :)

I hope you get some relief soon❤️ Just wanted to let you know that after having laparoscopy to remove endo in October (including an endometrioma), I had three very large new endometriomas that had already formed by January. So it’s very possible that your pain is indeed endometriosis and not phantom pains. I wish you the best of luck 🧡

DAML8
DAML8
in reply to UnicornKisses

Oh really, wow! Yes mine always grows back really fast but the Drs never believe me and say it’s not possible but when they open me up there’s always loads more. I don’t for one minute believe its phantom pains.

The next time a doctor tells you you have phantom pains tell him/her that they have phantom qualifications. 😅

If you want to get better, stay away from anymore surgeries for now and let your body do the healing. Your immune system is intelligent. But doctors treat it as though its stupid and tend to suppress it (medicine, medicine and more medicine!) rather then encourage you to strengthen it.

Give your immune system the right foods and the right tools to fight this thing then sit back and watch. Obviously some surgeries are important, but anything to do with conditions of the cells/tissue etc the body can take care of it.

Best quote "stop searching for answers in the same place that left you with so many questions"

You're stronger than you think and more intelligent than they'll have you believe.

All the best

M x

DAML8
DAML8
in reply to Mulan64

Thank you for your kind and helpful words.

What you are saying really makes sense.

My body and mind is definitely tired from fighting this disease for so long!

Im currently working on following an endo diet and letting my body recover from all the surgeries i have had x

Mulan64
Mulan64
in reply to DAML8

Same here. It hasn't been easy doing it ( my cravings for the wrong foods always crops up) but I am determined to heal and get rid of this thing as much as i can. Once you start eating right, you'll not want to go back to foods that are rubbish anyway. Your taste buds change, and your body will reject it.

I used to love ferrero rocher and would finish the whole box if i could! lol But after going on this diet , my husband once offered me one and i felt sick. I couldn't stand how sweet it was and i even tasted all the artificial chemicals in there and bleh! That's a sign of starting to heal.

I see food as medicine now and it helps to know that it is. Helps me stick to it.

" eat food as your medicine or you'll be eating medicine as your food" 😉

Chat anytime.

I hope I have helped you in some way. It hurts me to see others go through this.

M x

DAML8
DAML8
in reply to Mulan64

Yes, you have definitely helped me. I am going to try to persevere with the diet. It’s very hard because i am an extremely fussy eater unfortunately!

Thanks again x

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