next surgery

[jillybean85]

woohoo officially on the waiting list for my next lot of surgery, did anyone have to have two surgeons in and if so how long did you have to wait for the surgery ? They said it is dependent on when the bowel and endo surgeon are both free? Just wondered what everyone elses experiences were? thanks!

[Starry]

I had bowel and gynae together I was initially told 2 to 3 months due to diary coordination but they came back with a date 4 weeks away . I was just "lucky" I was told. I am private though employer so NHS will be longer.

[AllWeNeedIsluv]

Great news just wanted to wish you luck and hope your op date comes through very soon 💗😘🤗

[Cath77]

Yes, I have recently had surgery with my gynaecologist consultant and a bowel consultant. I did have to wait longer than the usual waiting list time but it was a big procedure so I was the only person on the theatre list that day. It also took a lot of time to decide an appropriate plan for surgery. I saw the bowel consultant independently and had a couple of appointments with a stoma nurse. I think I went on the list in March and had my op in August. My previous surgery (to open my bladder to remove endo) also involved a urologist consultant and my gynaecologist consultant. The wait for this wasn't as long.

Good luck with your surgery, hope it all goes well 😊

[jillybean85 in reply to Cath77]

Thank you cath. That was all very informative information. Im hoping to find out a bit more information today so I can find out roughly how long I have to wait.

Where was the endo on your bowel? Mines is on the surface but there is alot. It might have to be a colonoscopy aswell but not sure if that was if the endo had gone further in than the surface.

How are you feeling now? I won't repeat Jem's questions as I had a few the same. Hope you are having a successful recovery. It sounds similar to what I am having done. Xxxx

[jjeemm]

Hi Cath77

I'm due to have the same complex surgery as you with colorectal and gynae team of surgeons. Can I ask you some questions, please, if you don't mind?

1. How long did the surgery take, do you know?

2. I'm assuming you had a diagnostic laparoscopy before this surgery - how are you recovering now? Given the complexity of the surgery are you suffering more pain than after the initial laparoscopy?

3. Did the surgery open up previous laparoscopy scars? How are they healing?

4. Are you able to go to the toilet okay?

5. Did you need a bowel resection? If so, how did that go?

6. Were you told that if things didn't go according to plan you might have to have a hysterectomy/have organs removed?

7. How long was your stay at the hospital? I don't suppose you were able to go home the same day?

8. What was your diagnosis before the surgery? Apparently the whole of the back of my cervix is attached to my bowel and I've got a 3 cm nodule infiltrating my sigmoid colon (one of my ovaries is also stuck to my ovarian fossa and is 'bulky', the other is partially stuck to the ovarian fossa, my uterosacral ligaments are 'obliterated', as is my pouch of Douglas, and it looks like I've got adenomyosis too....the list goes on!!!!)

9. Have you been given any hormone treatment/other medication post-operation?

10. Are you feeling better now? I do hope so!

So sorry for bothering you with all these questions, only I haven't yet had an appointment to discuss anything with the gynaecologist who performed my diagnostic laparoscopy which took place earlier this month...I just received a letter afterwards saying that the plan of action was to arrange for this subsequent complex surgery....no idea when it's going to take place yet.

I really hope you have the speediest recovery and that you can go on to live your life endometriosis-free!!!

Take care and many thanks

[jillybean85 in reply to jjeemm]

Good questions haha! Saved me from doing much thinking lol.

My endo is on the surface of my bowel they reckon it is a case of scraping it away but my surgeon said there is alot of it to take away. It was maybe to do be done with a colonoscopy aswell they weren't sure at the time of my lap. But I have had an mri since then so I am sure they know now what they are doing as they have had meetings about me so I've been told.

When is your surgery due?xxx

[jjeemm in reply to jillybean85]

Hi jillybean85

Yes, so many questions!! I haven't had an opportunity to discuss anything with anyone yet. After my diagnostic laparoscopy my surgeon came to see me while I was still in the recovery room with a mask over my face and feeling totally groggy...also couldn't see anything because I wasn't wearing my glasses and I'm really short-sighted!! Anyway, all the surgeon said was that endometriosis had been found on my bowel and I'd need more surgery...no-one came to see me later on in the ward to explain exactly what they'd found. It was only 3 days later when I was home that I received a letter full of technical medical jargon and abbreviations detailing the extent of the endometriosis - what a horrible shock!!! No-one since has spoken to me - I've just been told that I've been booked in to have an MRI on October 20th....so I guess I'll have to wait for the MRI to be analysed and then I'll have follow-up appointments to see gynae and colorectal surgeons....It looks like I'm in for a long wait...

Would it be possible for you to phone someone to ask what they've found from your MRI scan? I hate the idea that people are discussing what's wrong with you without bothering to keep you informed - after all, it's only your body!!!

I really do wish you all the VERY best of luck with the next surgery and hope you won't have to wait too long before being told when it's due...it's all the hanging around and worrying about it that takes up so much emotional and mental energy as well....

Sending all warmest wishes to you - I really hope that they'll manage to cut away all the nasty stuff so that you can go back to living a normal life very soon!

xxx

[jillybean85 in reply to jjeemm]

Thank you, you too, let me know how you are getting on, feel free to message me any time if you want to discuss our horrid symptoms aswell.

I found out that I probably wont be seen till the beginning of next year, but if they can get more days with the two surgeons then it could be November/December, depends if they get that request accepted though so they can get through the waiting list of patients. There are apparently five patients ahead of me.

So at least I have a rough time frame of when mine will be, I can see about going back to work properly until Christmas at least. Which is reassuring, as I work for the council on supply in schools so it means I can do some shifts as if you haven't done any for a year they take you off the list, so I'll be phoning them on Monday to see if they have any work available now, I feel like I can get on a bit now that I know that, and not live life day by day. So i can totally empathise with the anxiety of not knowing and kind of going into the unknown aswell. It would be good if they didn't tell us important info when we were all groggy eh? It is pointless because you don't always remember them. I never understood that, and that they don't let anyone in with you so you don't have someone else to remember it for you.

How long did it take you to recover from your first lap? xxx

[jjeemm in reply to jillybean85]

Hi jillybean85!

As you'll have seen, I've just messaged Cath77 to thank her, like you, for answering all the questions about her surgery! Really, really so useful to know what it was like...and only someone who's been through it can really give you a proper idea...

Blimey, 5 people in front of you in the queue?!! Wow, all those poor women suffering too.... Before I was finally diagnosed with this horrible condition, I had NO IDEA so many of us were afflicted by endometriosis...it's so shocking too that we usually have to wait so long to be diagnosed and then so long to be treated properly!!! Oh well....at least now you're on the waiting list...hopefully you'll be told soon enough when your surgery is likely to take place. As you say, it's the uncertainty about what's going to happen that's so difficult to deal with...you feel like your life is on hold....Anyway, good that you're feeling you're able to get back to work now - working in a school requires a lot of energy!! Best of luck with your phone call on Monday - hope you can work some hours so that you're not taken off the list.

Yes, it's rubbish that the consultant tells you about the surgery when you're barely conscious and don't even remember what you're doing there!! I really thought in my case that she'd at least come up onto my ward afterwards to speak to me and my other half, but communication isn't her strength at the best of times!!!!

Yes, the recovery took quite a long time for me...and the only thing my surgeon actually removed was an endometrial polyp...all that pain and no gain!!! The recovery was probably delayed because I got about 30 minutes' sleep the night of the surgery and felt so exhausted I was almost in tears the following morning...and then after the surgery on Friday 8th September, the following Wednesday I had the worst period of my life!!! Just bad timing, unfortunately. I did start feeling loads better last Friday - exactly 2 weeks later - and now I'm pretty much back to normal although I've still got quite a bloated abdomen and my skin is very sensitive still all around my belly button...but anyway, yes, very much better - thank goodness!!!!

Hope you didn't go through too much pain during your surgery...how some people can be addicted to surgery is beyond me!!!!

Anyway, good to talk to you, jillybean85! I'm really grateful forums like this exist - it's so helpful to know that you're not alone!!

Take care for now and have a lovely w/kend....please do keep me posted about when you get the date for your surgery, by the way.

xxx

[Cath77]

Hi, I really don't mind answering questions - not a problem! This was my third laparoscopy. The first was purely diagnostic and the second removed endo from inside my bladder, part of my bladder and separated my uterus and bladder. My consultant used the same keyhole sites for both procedures. I think I just had one site after my diagnostic and two more after my bladder procedure. She used the same three sites again for my bowel surgery with one additional site. All are healing well. I also had a temporary ovarian suspension, sigmoidoscopy and dye test (after my left ovary and fallopian tube were located and mobilised) at the same time so I had two large sutures in addition to the four key hole sites. I had already had a colonoscopy with the bowel surgeon to get a better idea of the extent of the endo on my bowel and unfortunately he discovered that the endo had infiltrated my bowel wall as well as being attached. After much deliberation (which I was involved in ) they decided to remove the adhesions on my bowel and not attempt a resection. I had some appointments with a stoma nurse to give me more information and in case a resection was unavoidable. I was only in hospital for one night with the bowel procedure (a vast improvement on my four night stay for the bladder operation.) Both operations lasted about 5 hours, I think the diagnostic lap was about 30 mins. Both the bladder and bowel were more painful in recovery than the diagnostic lap but nothing too bad. I kust kept topped up on pain meds. The bladder procedure required a supra pubic catheter for a few weeks after which was awkward. I'm four weeks post op now and starting to get back to normal. I've not had any hormone treatments but have actively resisted these as I've been trying for a pregnancy for a few years. I'm 40 now 😟.

Hope this helps, please let me know if there's anything else I can help with - of course this is just my experience and every case is different.

Good luck 😊

Oh I nearly forgot...Im going to the loo fine now. It took a while to get my bowel working normally but I think that is to be expected and pain meds don't help!

[jillybean85 in reply to Cath77]

aww wow 5 hours?! jeezo! I will be prepared for something about 3 hours because I don't think I have as much to do as you have had done. Reassuring to know that you are feeling back to normal after 4 weeks, and that the toilet pain is gone as that is the part that I hate, aswell as the pelvic pain, do you still have pelvic pain or has that gone too? My pelvis seizes up real bad when I am due my period. Where did you get your surgery? xxx

[jillybean85 in reply to jillybean85]

oh and how did you feel after you woke up from being out for 5 hours, any different to the first investigation?

[jjeemm in reply to Cath77]

Hi Cath77

Like jillybean85 I'd really like to thank you SO very much for taking the time to answer all my questions! Yes, it really is so helpful to hear all about your experiences - as you know, the medics and the literature they give you don't always give you the full picture!

I'm so pleased to hear that all your wounds are healing well...and you're still in one piece and healing well after 4 weeks :)...that's really excellent! It's also a relief to hear that you didn't need a bowel resection and only needed to stay in hospital for one night. For my diagnostic laparoscopy that I had earlier this month I had to stay in overnight because I couldn't pee afterwards and got about 30 minutes' sleep all night!! Not good when you've just had surgery!!! It's also reassuring to hear that you got through the pain okay...yes, keeping on top of taking the pain meds is always really important, I've heard. It's also really good that the meds this time stopped you from being sick....must have been so horrible after your bladder op - you poor thing....

Yes, I'm always concerned about not being able to go to the toilet after an operation...particularly because your stomach muscles go to jelly and you can't push...but yes, as you say, I suppose since the endometriosis had infiltrated your bowel to such an extent, it's to be expected...so pleased everything there is okay now! We take so many things for granted until we have problems....like everything in life I suppose....

Anyway, thanks SO VERY MUCH again....I really appreciate all this info, like jillybean85 - it's so good of you to share it. I do hope you have a much less painful period this w/kend...really crossing fingers that all the surgery you've had has had beneficial effects and all the suffering you've endured is coming to an end.

Wishing you all the very best and sending you big hugs!

[Cath77]

My period is due this weekend so I should know a bit more then. My symptoms are usually worse once I've finished bleeding. I get a lot of pain around my tail bone and down my left leg...a bit like tooth ache.

I had more pain meds in recovery with the longer procedures. Morphine made me sick with my bladder procedure but the anaesthatist said she'd give me some sickness meds before I came around to combat the sickness this time. That seemed to work. I was in a bit of a daze for the first night and had a fluid drip, but fairly comfortable all considered.

[jillybean85 in reply to Cath77]

it is so helpful speaking to yourself who has been through it, I probably wont get mine until the start of the new year as there are five people infront of me. I am quite far down with being only 5 in front, thought that was a bit crazy. At least I can just get on with things as 'normal' until then. I hope you recover well and you feel a difference in your next period. I am due mine in the next couple of days, had a horrid migraine the last few days, been on aspirin today to get rid of it. I have never had to be given Morphine before, so I don't know how I'll respond to it. Hate being sick tho. Hopefully I can get a couple of months wages in before my op which would be helpful.

wishing you well in your recovery and all the success in conceiving. Message me anytime xxxx