What does this mean in my surgical notes?

[iLoveMyTortoise]

Hey,

I had my laparoscopy done in November by a gynaecology oncologist after a pretty cancery looking MRI. Before my operation I asked my surgeon, in the event they found endometriosis would they remove it. She categorically said no. After my operation she called with my biopsy results, no cancer “just endometriosis and scar tissue on both sides of the peritoneum”. I’m pretty sure during the call I asked her if she removed it and she said no, but it’s a blur. I could be wrong. She discharged me then and there with no treatment. She wasn’t very nice to me the whole time even when she thought I had terminal cancer.

I ordered my surgical notes and on one bit it says “left and right peritoneum excised and removed for biopsy”

I’ve tried ringing up to ask for weeks but nobody answers calls or calls back. GP can’t get through either.

I’m still feeling really unwell with what I assume are endometriosis symptoms but what if they removed it all and I’m just ill for no tangible reason. Really feeling frightened I’ll never be better if that’s true.

Could it just mean they excised bits for biopsy and left the rest as is or does it mean they removed it all and I’m going to have a rubbish life?

Thanks xx

P.s. at the top of the notes it says

Principal Operation - laparoscopy, peritoneal biopsies, peritoneal washings

Other Operation - peritoneal washings

(So no mention of removal of endo and the operation took 1hour)

Also all Letters after surgery have referred to the procedure as just laparoscopy with biopsies or laparoscopy with biopsy’s and washing.

There is a single mention in one letter of stripping both sides but in that same letter she gets where the endo was wrong. I also don’t know what stripping both sides means.

[Nikkky]

Hi there. It’s like being a detective trying to piece it altogether isn’t it? It certainly sounds like she’s only done the biopsy and not treated he endo. You mentioned she was a gynae oncologist so she either doesn’t have experience in removing endo or she’s chosen not to treat it because as far as she’s concerned she’s looking for or ruling out cancer. I think a lot of it depends on the attitude of the consultant and it sounds like she’s got an awful attitude. That always gives me an insight into how they must be in the operating theatre-if they don’t give a crap in the consultation they’re going to do the bare minimum during surgery. The good thing is it isn’t cancer and you have actually got a diagnosis of endo and scar tissue. Half the battle is getting a diagnosis when it comes to endo. On that basis I would ask your g.p to refer you to an endometriosis centre so you can see an endo specialist (not just a general gynae). They didn’t exist when I was first diagnosed and treated but I’m sure there’ll be ladies on here who have experience of the procedure and how best to tackle it. Good luck!

[iLoveMyTortoise in reply to Nikkky]

Yes, her attitude has been really very cold and as if I’m the last person who needs to know anything. She gave me about a minute of her time to tell me there was a very real risk I could have cancer then bundled me out in tears. I’ve had so little information about anything that I’m left with too many gaps to worry about.

Her letters have been very dismissive of endometriosis in general. It’s clearly not something she cares about.

My GP has been very nice and when I told her everything she immediately referred me to an endo specialist centre in Manchester instead. I understand that it’s going to be a very long wait. I’ve booked a private consultation for next month too.

I just don’t want to turn up, show them my surgical notes and them say that one sentence means I’m wasting their time.

However the surgical notes are specific about instruments being used to enter the body and Gas levels etc etc so surely they’d also contain specifics about and removal if it took place and where they did it. There’s nothing like that.

I realise I sound slightly bananas but after years of being dismissed I don’t want anyone to take my hope away now I have a diagnosis.

Thanks xx

[Nikkky in reply to iLoveMyTortoise]

Oh no, you’re not bananas at all! I understand exactly how you feel. Most of us on here have had similar experiences over the years. I’ve seen a number of consultants and it’s so frustrating and upsetting the dismissive and patronising attitude of some of them. I used to think they didn’t believe me and thought I was an attention seeker but I came to realise that their attitude was most probably a result of them feeling out of their depth. Rather than admit it they turn it on the patient. Also, the notes taken during my surgeries were so brief they were pretty useless. I expected my hysterectomy notes to be a bit more detailed but there was no detail at all. All of the letters that were sent to my g.p were full of errors too, which doesn’t help when trying to get further help. It certainly leaves you with questions. The best thing you can do now is prepare for your next appointment. It might help to keep a symptom diary and record the pain relief you’re taking. Take your consultants notes too

[iLoveMyTortoise in reply to Nikkky]

Thank you, I really appreciate it. It helps to know I’m not the only one feeling this way or having my treatment affected by poor note taking and communication. Sad but comforted that it’s not just me and this is unfortunately common. I’d go on about how wrong it all is but I’d be preaching to the choir.

I’ll definitely start a symptom diary to take with me next month. That’s a really good idea.

Thanks again xx

[Avourneen]

This woman has treated you outrageously. It's even worse because she is a woman, you would think she would have more sympathy. It sounds as if they just took a tiny bit out for biopsy nothing else. But on the plus side you do have a diagnosis get your GP to refer you to an endo specialist gynae. If I were you I would put in an offcial written complaint to pals about the doctor who treated you. Imagine if you had had cancer and she was so cold and unkind to you. It may be for the best that she didn't remove the endo and she sounds like she has little idea what to do with it.

[iLoveMyTortoise in reply to Avourneen]

You’d think she would have at least some sympathy but no. Thankfully my GP surgery are supportive and sympathetic so referred me to an endo specialist centre at St Mary’s Manchester. It’ll be a long wait and I’m struggling on the mini pill so I have made a private appointment next month. I am seriously considering complaining. She didn’t just have a bad attitude. There was something earlier on that was very off too so I’d like it flagging up. Thank you x

[Avourneen in reply to iLoveMyTortoise]

If the mini pill is making you bleed a lot you can double the dose. I struggled with it and just kept bleeding but my gynae said just take 2 pills per day and the bleeding stopped really quickly no period since. The only problem is then you will just have to explain to the team at Manchester that you arent having periods at the moment and remember the symptoms. xx

[iLoveMyTortoise in reply to Avourneen]

Ah right, I didn’t know you could do that actually. I’ve been on my period for months on the mini pill. I’ll definitely discuss this as the private appointment because I’m not able to take the combined pill and this would be a good alternative if she agrees. Thank you xx

[lennysmummy]

Hi everytime a surgeon looks at part of the body a biopsy is always taken as procedure. It means the biopsy was clear, which is great.

[iLoveMyTortoise in reply to lennysmummy]

I am super relieved about that bit. It was a tough old few months. X

[KAgwill]

This actually made me tearful, I am so sorry you were treated this way!!

It’s not right that we are treated like this ☹️ I’m so glad that it wasn’t cancer x

[iLoveMyTortoise in reply to KAgwill]

Thank you 😘 It’s really not right we are treated this way. I’m really grateful for this forum so I know I’m not going nuts and there are people who understand the impact of this. Xx

[Helena45]

I'm sorry you feel let down by the surgical team. Maybe they should have explained their intended investigation better for you in advance. Were you fast-tracked to the oncology team for possible peritoneal cancer based on your MRI?If there is any suspicion of cancer then the protocol is to take biopsies of the tissues and to wash the peritoneum to pick up trace cells that may be in the fluid surrounding the pelvic organs. No further surgery would be performed at the time as it could increase the risk of spread of cancerous cells and this would take precedence over any endometriosis that is present. There is also guidance not to perform excision of peritoneal cancer unless all visible deposits can be removed. Surgery for this can be in excess of 8 hours and usually accompanied by chemotherapy.

If you are clear on the biopsies then that's fantastic news but now you need to be seen again for the treatment of the endometriosis.

Good luck with it all and please ask lots of questions when you are in clinic so you know what to expect and why the team make the decisions they do.

[iLoveMyTortoise in reply to Helena45]

Hi, yes it was rushed through based on an MRI. I had an indeterminate 3cm mass above my left ovary and nodularity extending and scattered around it on the left side of the peritoneum and all over the right side too. (Extremely high oestrogen levels were what necessitated the MRI. )

I was rushed through for surgery which was completely focused on ruling cancer out. I actually kept asking if I could have endometriosis and she poo pooed the idea. It was at that point I asked if they did find it would they remove it and she said no.

With that in mind your message makes complete sense of it all and has really put my mind at ease. I really appreciate it. Thank you. I just wish they’d explained this to me themselves.

Thanks again xx

[Helena45 in reply to iLoveMyTortoise]

I hope you manage to get things sorted now through an endo specialist centre and at least you are armed with the surgical findings/MRI and biopsy results to make the next stage more streamlined. Wishing you all the very best and hopefully you will have a consultant with a more approachable manner.

🙂

[iLoveMyTortoise in reply to Helena45]

Thank you very much indeed xx