Multiple surgeries and hopeless

[Ash24601]

Here’s a brief background:

2011 - diagnostic surgery (non specialist)

2013 - excision surgery (in specialist centre but not by team)

Jun 2016 - surgery by The specialist (not enough time to treat)

Aug 16 - surgery by his team to remove what was found, but more endo found on bowel.

Aug 17 - joint surgery with team and colorectal surgeon done to remove what was found on bowel

Since the very first night in recovery from the bowel surgery I had severe sharp right side pain (never had rightside pain before). I’ve been hospitalised with this several times since, there was also a lump in the area but that went away with antibiotics. I have had worse pain and worse bowel symptoms since. The pain seems to subside when I push on the area and currently that’s the only way I can get around.

The team have me on the list for more surgery which is due in December.

This weekend things got worse and I saw my emergency gp. She said I just have to get through one more period, but she said I should defo make sure the colorectal surgeons are there.

And today I found out they’re not!! And they only have me down for “1-2 hours” (despite all of the above being 6-8). I was told I’d have to go back through the consultation process if I want the colorectal guys there, despite me explaining all this in consultation!!!!

I’m fed up of unfinished surgeries, my life has been on hold for my entire 20s! I really can’t find hope anymore and just want it to end.

[kittykins7]

Hi Ash,

Sorry to hear of the shabby way you have been treated.

Which specialist endo centre is it if you don’t mind me asking? Where’s it based?

If I was you I would print off the NICE pathway guidelines for endometriosis and look at the parts in specialist endo centres and have a read. Then I would send a letter of complaint to your endo centre fao somebody senior and include your summary if shabby treatment, quote some if the NICE pathway guidelines they should be following and threaten to escalate further if this is all of your treatment is nit dealt with in a timely manner by a specialist at the centre.

As you have stage 4 and on the bowels you are entitled to this x

[Ash24601]

Unfortunately it’s wales and the only centre and they won’t refer to England. (Myself, Euk, the team themselves and fair treatment for women in wales have been trying to change this)

[Whirlygig44]

Hi Ash, I’m new to all this & awaiting a Lap - going for a second opinion as not sure I like the sound of the way my current Gynae wants to Persue surgery. Anyhow I have read your experience & feel that you have been treated badly!

Which hospital in Wales are you being seen at? I have googled the Bsge centre in wales & low & behold they have a website.

They are based in Cardiff, is there anyway in which you could insist your specialist or GP refer you there? bsge.org.co.uk

I do hope you get the help you deserve ♥️

[Ash24601 in reply to Whirlygig44]

That is the specialist

[Whirlygig44 in reply to Ash24601]

What, the specialist you are currently under? 😯

[Heloo85]

It is terrible you have been through so many surgeries... But in saying that.. I, so far, have been through:-

November 2015 lap. Stage 4 DIE diagnosed. Sent to BSGE.

December 2016 excision. Gynea, colorectal, urologists. Complex major surgery.

Disease returned exactly a month afterwards.

There is literally no right or wrong way to treat endo. There is no telling how disease will respond. I am 2 years post surgery, i am active in disease, but no further surgery planned. No treatment has worked! Should i complain? My disease didnt respond to surgery! Is it my surgeons fault? Not at all. He did all he could to help! Should he do more surgery? In an emergency, yes, sure. But why rush? Surgery can cause complications in itself.

As horrible as it is to battle a chronic disease, it is a chronic disease. Only some go on to get 'cured', a cure isnt promised.

Good luck

[Ash24601 in reply to Heloo85]

I’d understand that, what I don’t want it more half surgeries. I want a complete excision then see what my body decides to do. Like you said surgeries have their own risks so I don’t want them to go in then go in again. But also there’s the wait, I’m now being told I have to either “start again” and await another consultation (despite me explaining the new sharp right side bowel pain since the night of the op, in not one but two consultations), or I go ahead with this surgery to “look”, both will involve a long wait (if they find bowel involvement I’d have to wait another year for the colorectal surgeon) and I don’t know how got deal with that when I can’t even eat.

The fact I had this new severe pain (my dad was crying he thought I was dieing) since the first night of bowel surgery is what worries me.

[Ash24601]

I’d like to point out that in no way am I bad mouthing the team or hospital, it’s just crap that we cant be seen if other centres to minimise waiting times or time restricted surgeries.