What now?

[CryBaby91]

So I had my post surgery appointment with my specialist a few weeks ago, I've been trying to digest what he said...but honestly I feel so deflated and like I'm going in circles. My hospital is BSGE registered, and there's only 1 other hospital that is BSGE in my region, so I feel stuck. Basically he told me that during my lap he found extensive endometriosis patches throughout my womb and in both fallopian tubes, which he said he used ablation on due to the delicate nature of the tubes (I have 2 kids so maintaining my fertility is not something I'm fussed about, so I'm not sure why he felt this was necessary but there you go). On top of this he said he found severe adhesions that had glued my uterus to my stomach (I was previously told bowel by a doctor on the ward, but they apparently misinformed me). He said this is rare but was caused by my cesarean section. What baffled me was he said this WOULD NOT cause pain! How could my stomach.. which digests food...being stuck to my uterus NOT cause pain? I told him that the pulling sensation and swelling was gone after my surgery in August, but since October it has returned and now it is the same level as pre surgery. But he maintained that all the thick adhesions would cause ZERO symptoms. I also memtioned that the pain in my left kidney was still there and didnt go away, neither did the pain in my upper stomach on the right. But he just said they are not endo related and asked if I had other tests to rule out basic stuff! I explained I've obviously gone down that route, but he dug in and said that my pain is not endo related anymore because I've had surgery. I had to do my breathing to stop myself crying, honestly it was devastating being dismissed like that.

In a nut shell he has said I can't have a hysterectomy because I'm too young (31, coming up to 32, so I do agree for now I'm too young). That I've had my lap so that's all he can do, and he's referred t

Me to a pain clinic to try and deal with the pain. He won't do an MRI to check for DIE because he said the lap would have shown it, so he is basically saying "the lap should have cured you"

He's a specialist....he should know surgery isn't a guaranteed cure...I feel so let down. I told him that I'm acutely aware that nothing is a cure and it's all going to be about management of the pain, I'm not expecting miracles. But to dismiss my kidney symptoms and the upper stomach symptoms as "not endo" after all the tests that ruled out EVERYTHING ELSE (Kidney stones, lupus, kidney infections...I've been in A&E more times than a junior doctor lol)...it feels like he's totally written me off.

So what now? What on earth do I do? Is this just my life now?

[635703]

OK, so you have a right to a second opinion. Was he an Endo Specialist? He was a Gynecologist but was he an Endo Specialist?

You can also write a complaint about him. Personally, I’m unsure that would help but you may need to do it for yourself. You may also need to do it for a second opinion.

There is a way through this nightmare and remember to keep asking the questions you need answering. X x x

[CryBaby91 in reply to 635703]

It is a BSGE registered hospital and he is a BSGE consultant, so yes he's a specialist. But he wouldn't entertain discussing those symptoms at all ironically when I saw him via his private practice he was very interested in those symptoms and said it was likely endo related, but now im NHS it is like he has written me off. If i complain I'm really screwed, because my hospital is the only severe endometriosis hospital in west yorkshire. And I don't want to lose a decent hospital for the sake of a comment he made especially when I suspect that he was being defensive because his hands are tied and he thought I blamed him. Which I don't. When I explained that I understand surgery isn't always successful and it is a case of managing expectations he seemed to soften.

I don't know if I should push for an MRI? I can't look further afield for another doctor atm, it is already a 30 min car drive to my current gyne. Feel like I'm stuck tbh!

[635703 in reply to CryBaby91]

you can ask for clarity and you can ask for a second opinion.

[CryBaby91 in reply to 635703]

Who would give the second opinion though? This is my dilemma, there's no one else to go to. I can't travel further and there's no one in my area as that is the best BSGE hospital. The other consultant at that hospital is less experienced and only deals in mild endo, the nurse is a specialist nurse and she dismissed it too. He's the severe endo guy lol. I do not want to lose access to the best hospital in my area over a disagreement on what symptoms are endo related and what aren't, especially considering he diagnosed me and believes all the other symptoms are endo. It feels like throwing out the baby with the bath water lol. I was more hoping for advice on something concrete I can go to the nurse with and say "hey, can we look at this?" Which shows that my symptoms may be endo related. Like a credited research or something into kidney pain and endo?

[635703 in reply to CryBaby91]

Good luck 🍀

[Starry1977]

hi does your specialists surname start with a k? If not there is another endo specialist in West Yorkshire you could try who I have used and found to be very good. Although I am going private so maybe the experience is different!

[CryBaby91 in reply to Starry1977]

He does yes! Would you be able to private message me with the details please?

[Starry1977 in reply to CryBaby91]

I don't know how to lol but if it does begin with k it's the one I'm using anyway. I'm really surprised at your treat from him .

[CryBaby91 in reply to Starry1977]

I'm surprised too! He came recommended by a friend who had severe bowel endo, and you'll obviously know the reputation of the hospital is excellent. I will say that I'm VERY happy with the surgery, despite it not being 100% successful. He did a really tidy job, my wounds are tiny, care on the ward was brilliant. And at the end of the day he finally diagnosed me with endometriosis and adhesions, so I can't complain there after years of being told I'm crazy lol. But...I think he's sticking his head in the sand because he is under pressure with MASSIVE waiting lists and not many treatment options. He also probably expected me to blame him for the pain still being there, he did soften significantly when I mentioned that I know endo has no cure and I just want to have a more realistic focus on pain reduction not complete removal of pain, as that's unlikely. We also both study languages at the open University! So I'm shocked at how cold he was...he wasn't like that during my private consultation...very chatty and friendly. Now it's all business lol must be a time/how busy he is thing! I'm not angry, and I don't really want to abandon such a good hospital just yet. I just wanted to know if anyone had anything concrete that I can go to him and say hey...have we considered this? You know what I mean? Xx

[Starry1977 in reply to CryBaby91]

Yeah I know what you mean. Have you tried any contraception or coil? Won't help adhesions but might help other pains if it reduces bleeding. I have stage 4 with adhesions sticking my bowel to uterus. There's also more endo in there. But I don't have significant pain just weird discomfort at different times of the month. I'm trying noriday for 6 mths. As my next option will be a full hysterectomy which I'm reluctant to do as my symptoms are manageable. However I'm nearly 46. I think you're right though. The nhs is pushed to the limit atm.

[CryBaby91 in reply to Starry1977]

Sadly yes I've had so many contraceptives from age 12 to around 27/28 when my husband had a vasectomy. No matter the brand they mess with my mental health really bad, I have PTSD from a series of childhood traumas, so I'm prone to relapses without the hormones lol. My last attempt at hormones was the GNrH Gonapeptyl injections, which unfortunately caused the same issues. It also massively affected my concentration, and I'm a third year university student so that was massively detrimental. I agree with the adhesions not causing pain per say, more like a pulling sensation for me. It feels as though there's velcro in my stomach, running up from my cesarean towards my rib cage, and every now and then if I move funny it will tug and pull. Which is unpleasant and makes me stop, but not technically painful. The left flank pain is intense, happens really randomly and then it's gone again, like a sharp knife in my left back. Back pain and leg pain is the worst of it though, and like a heavy feeling in my belly down to my bum, like a pressure in my coccyx. Does that all make sense? It's so hard to explain isn't it! Somethings are definitely painful, others are more easy to describe as uncomfortable or unpleasant, or maybe just "other" "strangeness" inside.

I can absolutely see why you're reluctant with the hysterectomy, let's be realistic too...they are not a guaranteed fix. I really hope you manage to find a solution too! Xxx

[Avourneen]

It sounds as though you will have to go further afield. I think you might have to travel further,most of the top specialists are in London, you could get on a train and go down get an MRI privately from a different specialist and your regular doctor would not have to know at all. It might be a pain in the butt to get there but it looks like the only solution.

He should have done an MRI before the lap, quite often things are missed on the lap. A good TV ultrasound would also show what is going on but you needa specialist sonographer. Your pain absolutely does sound endo related. I think a lot of surgeons have huge egos and cannot accept that their surgery didn't work or didn't help.

You say you can't travel further afield but I think you will have to. Getting help with edno is very hard, very few doctors have any idea what they are doing. i read a survey yesterday carried out on gynaecologists 82 percent did not even know what endo symptoms typically were. Starry above seems to have a recommendation of someone else but I have had to travel a lot to get help and it was worth it.

Good luck

[CryBaby91 in reply to Avourneen]

Thanks so much, that's made me feel a bit better to be honest! I'll have a look into where we could travel to and see what my options are. I did push for an MRI because I had blood in my urine (during my period most but also for the 3 days after it finished) and I was concerned about DIE. He just said "severe endo is incredibly rare so it won't be necessary". It was so baffling! In my experience MILD endo is rare lol most people I speak to have it involving organs.

It's so sad how poor the knowledge is even among specialists! And how they allow their ego to get in the way. I agree there btw, I think it was ego and he thought I would blame him for not being pain free. Which I dont. Xx

[Avourneen]

TBh your doctor doesn't sound good DIE isn't are at all. If he was a good doc he would have done MRI before op , it really helps identify where the endo has spraed so I odn't see how he could get it out properly if he doesn't know where it is. Blood in your pee could be a sign it's in your bladder or something it really needs looking into properly.These BSGE centers are touted as so great but quite a few people on this site have posted about very poor practice and bad experiences at them so I'm not convinced. I think they are hit and miss like most other endo provision. Don't give up .keep pushing , keep fighting you will have to push to get proper treatment so don't let these people make you lose hope or motivation. Good luck xxx

[CryBaby91 in reply to Avourneen]

Thanks so much! I would agree with you there, it appears to be incredibly hit and miss. But he was not like this when I saw him at his private practice, and pre the mega backlog that he had of 2 year waiting lists (I waited 18 months). So i wonder if any of that has anything to do with his change in attitude 🤔 it's strange because one minute the team is AMAZING and so understanding...then the next it's all cold and crap lol. Feels like there's not many professionals who actually fully understand this! Xxx

[Avourneen]

Sad to say this but I think amongst a lot of consutants they have the feeling they are little Gods. I had an ex who worked as a theatre nurse and he told me their star cardio thoracic surgeon would often kick staff if they were not fast enough at handing stuff over !!!

Also although I am very glad we have the NHS there is no accountability at all, when you go private someone asks for your feedback on each nurse, each doctor every aspect of your experience. When I went private for my second op I had the same nusre who put in a really big effort to make sure I was okay when I came round, I was allowed to speak to my anaethstist about the bad experience I had before. My surgeon came round to chat with me pretty much as soon as I came round and the nurses checked on me every 15 minutes.

When I was with the NHS I saw the surgeon before the op and never heard or saw from him again. No one checked on me or even read my notes, they gave me painkillers i was allergic to which made me vomit for 20 hours after I came round. I had stated this explicity on the notes no one read them.I was left in a room on my own vomiting like nobodys business, there was nothing to throw up into so I had to vomit into my water jug.

I had one nurse be very rude to me but mainly no one came when I pressed my buzzer.

In the private sector nurses and docs know their feedback will be checked by their manager, the head of the whole hospital came to check on me right after the surgeon and asked me for deatailed feedback on my experience.

With the NHS there is a feeling that you are getting this for free , so you should be grateful and I don't think complaints or bad experiences are ever followed up. Otherwise how would things like the recent scandals at maternity hospitals happen? Dozens of people complain and are ignored.

I know some really really lovely surgeons who definitely treat NHS and private pateinets in the same way but I fear there are a lot of surgeons who feel they don't have to treat NHS pateinets well, as there is no come back.Most doctors are extremely well off and well educated and often view their lower status colleagues and NHS patients as peasants who are ignorant and don't deserve any help. I think that there's a big divide between those who go into medicine because they want to help others and those who go into because they want to earn big bucks. It's the luck of the draw who you get, what I can't understand is why there are so few women gynaes they would I'm sure have a much beter understanding of the problems we face.

Finding a good gynae who knows his/her subject well and has a decent bedside manner is very very hard. XX

[CryBaby91 in reply to Avourneen]

Gosh! That is absolutely awful, what on earth makes him think he can just kick people like that! What a douche lol.

Omg that is a MASSIVE difference in care experience! I can empathise with the NHS one of being left after the surgery, sadly my surgeon didn't speak to me after and left it to another random surgeon who wasn't actually present for my lap. They told me that my bowel was stuck to my uterus, which I then found out 3 months later was incorrect! It was my stomach. The discharge said "belly" not stomach, so that's 3 different places they claimed it was lol. It left me VERY confused. I only had that cleared up 23rd December, ny surgery was early August! So I completely agree, the aftercare within the NHS can be lacking. Though the nurses did try their absolute best to care for me, but they seemed very pressed and stressed, which undoubtedly has an effect on the patient.

I had this same question, why is it mainly men who have control of womens health? How does that make ANY sense lol! Likely due to the poor career support of women, poor recruitment, focus on recruitment for nursing/midwifery. I've seen 3 gynaes and all have been men lol! Funny being told what my own "normal" is with periods from a man who has never experienced one! Xxx