Questions to ask gynae, 1st appt, requesting hysterectomy

Hey ladies

Can I ask for some ideas for questions to ask my gynae? I'm still waiting for consultation appt from referral from GP, but hopefully should hear soon.

Firstly, I've got my symptoms written down. I've also got my history and my family history written down too (in case that influences treatment options). I'll briefly go through it all, so you have an idea of what I'm experiencing and can maybe suggest what I should ask. This is gonna be long! Sorry!

Symptoms

Constant lower abdo pain (worse when period would be due (am on Depo-Provera so don't have periods), worse when going to the toilet (wee and poo), and worse during sex).

Heavy, painful periods (when I have periods I have to change Tampax 2-3 hourly first 2-3 days, lasts 7-8 days, barely able to function from pain).

Lower back pain (been told Chronic Back Pain, unsure whether connected to endo).

Frequent diarrhoea (been told IBS, trigger foods do make it worse, but so do periods and ovulation).

Rectal/Anal bleeding (thought initially it was damage from colonoscopy, but been bleeding during poos for over 2 years, even when watery diarrhoea, and even started bleeding on knickers between bowel movements recently)

My history

5 children - 1 mini-pill baby, 1 mirena coil baby, 1 combined pill baby. 2 natural births, 3 emergency c-sections. 2 babies with group b strep (me with it second time). 1 threatened scar rupture.

IBS - take mebeverine and buscopan when it's bad.

Chronic back pain - take paracetamol, ibuprofen and tramadol

PTSD since traumatic colonoscopy 2010

2 x laparoscopy - 2004 and 2010. 2004 showed nothing, 2010 showed endometriosis (bladder stuck to abdo wall, uterus stuck to bladder, bowel stuck to uterus) and adhesions, they removed as much as poss).

Colposcopy after 2 abnormal smears 2005, CIN 1 found, treatment May 2006.

Dad's history

Type 1 diabetes since age 22

Stroke 7-8 years ago (blood clot)

Mini stroke 2011

High cholesterol

High blood pressure

Mum's history

5 miscarriages 1978-1988, all early stage, no reason given.

Very heavy periods (to the extent of bleeding through 2 pads onto carpet walking to bathroom)

Laparoscopy approx 1987 showed endometriosis.

Hysterectomy 1988 aged 38.

Heart attack 1997

Triple heart bypass 1998

2 blood clots on lung 1997-1998

High cholesterol

High blood pressure

Chronic obstructive pulmonary disease diagnosed 1999

Emphysema diagnosed March 2012

Anyway, I am absolutely certain I do not want any more kids. I'm 28, but with 5 kids I can't be out of action for 4-6 weeks after laparoscopy every 2 years. I would prefer a hysterectomy. I'm guessing they would want to do a laparoscopy anyway, even if its just to diagnose for sure that the endo has come back since 2010.

So my first question, after going through all of the above, has to be

"Can I have a hysterectomy?"

Second question (if they say yes) would be

"could they do it at same time as laparoscopy or would they need to do it separately?"

Third question is

"If it has to be done separately, can they do it laparoscopically or LAVH?"

I'm guessing if they say no, any other treatment options would depend on my and my family medical history, but any ideas what else I should ask?

Thanks all, sorry for such a long post!

[Squid]

Hey, I have an appointment on Monday with my consultant and will be asking the very same question for scarily similar reasons! I've recently had my second lap and CT scan and all normal, but I have all the problems you have (except the bleeding between pooing bit) and Im in so much pain with my back today i just can't hack it any longer. im sorry i don't have the answer to your question but I just wanted to wish you well xxx

[Hidden]

Thank you squid! I hope your appt on Monday goes well, good luck x

[Coz235]

Hiya,

i have been through so many laps now i have begged my gyne to do a hysterectomy, last op i had was to removed large amounts of endo from my diaphram which was a vile recovery. He said he wouldnt consider it untill after i was 30 (im 27) as it is can cause other complications and they do not like to do it before you are 30 unless you are in a life threatening situation. i have told him i was be banging his door down in 2 and a half years, he said he will be waiting for me. haha. good luck !!!

[Hidden]

Thanks Coz, I've read lots of different accounts from lots of people and by the looks of it it depends on the area you are in and the surgeon just as much as your personal circumstances. I can but ask! If they say "after I'm 30" then I only have a year and 4 months to wait, so if I end up going 2 years before recurring endo again then I'll ask again then.

Thanks for your reply hun

[ginger83]

Hi, sounds good so far (the details). Do you keep a pain dairy? Previous consultants have always asked to see one for me. I had my 3rd laparoscopy in May and it was diagnostic only which was realyl annoying as I knew I still had endo. They didn't carry out any treatment during the op but am due to have a hysterectomy soon anyway. My endo is interferring with daily life and even the simplest of things can be a struggle. The first consultant I saw here in Plymouth said I wouldn't be operated on at all and certainly wouldn't have a hysterectomy as I would become old overnight and wouldn't be able to look after my children then. She clearly needs to do a bit more research. Her boss who I saw at my next appointment booked me in for a lap straight away then put me on decapeptly SR injections, 6mth course. These injections put you through a chemical meopause and temporarily stop your ovaries from working. This is the closest indication to see if having a hysterectomy would work. Obviously the last thing they want to do is remove somebody's womb then find it didn't work, especially in someone so young. Have you tried these injections? If I would strongly recommend you try them. They are the only thing in over 10yrs that have worked for me. Good luck! x

[Chrissie66]

Hi Ladies

I'm sorry for butting in on this conversation but this thing about hysterectomy as a cure or even a treatmen for endo scares me to death

Hysterectomy is a big operation, physically and emotionally, and it does not cure endometriosis. Consultants offer it as a last resort when all other options have been exhausted, or when they are not sufficiently informed about endo to know what to do next, but 9 times out of 10 the endo will come back.

Decapeptyl (Zoladex or Prostap) injections are absolutely not an indication of whether or not a hysterectomy will work. They 'work' on endometriosis because they starve it of the estrogen it needs to survive, and for six months at a time, or longer if you are monitored, they are absolutely brilliant for controlling endo. But during that time you are at increased risk of loss of bone density and lots of other menopause related problems. People going through normal menopause, or menopause induced by total hysterectomy have to take HRT to stop those things happening. Guess what. Endometriosis loves HRT. It doesn't need your ovaries if it's being fed with HRT. And even if you don't have HRT, your body compensates by producing just enough naturally for your endo to jump at. Within a few short months, you could be right back where you started, full of endo. What's the gynae going to do then?

Obviously everybody is different and at the end of the day it comes down to personal choice. But if anybody has ever even suggested to you that hysterectomy is a definitive cure for endo and that it is therefore the answer to all of your problems, they are wrong. Until you hit natural menopause there is no cure for endo, only management.

I know this sounds negative, and I am sorry for that. But you only have to read around this board for stories of ladies who have gone into hysterectomy full of hope and months or even years later their endo has returned. It's a huge decison which shouldn't be taken lightly

xxxxx

[Hidden]

Thanks ginger. I haven't kept a pain diary, but will from now til my appt (which came today - 2nd Jan). What should I put on it? I'm guessing I should write every day that I have constant pain, and guessing that I need to write when it is worse and what triggered it being worse? But should I also write down when I bleed from my bum too?

Thank you for your input chrissie, I really do appreciate it. I'm not taking offence, but my mum had endometriosis and had a hysterectomy and endo removal when she was 38, and despite having 10 years of HRT her endo did not come back. Some people are lucky if the surgeon is good enough to get all the rogue tissue.

I haven't had the injections, perhaps the gynae will suggest that, but from what they do they sound a little similar to the effects of the pill etc. If that is kind of how they work then I don't know if I would be suitable for them as I'm not supposed to take the pill or be on any hormone contraception for too long due to my family history (dad had a stroke and a mini stroke, mum had a heart attack and 2 blood clots on get lung amongst other things, and they both have high blood pressure) so perhaps they would say the same for the injections, I don't know, I'm not a gynae so it's up to the really. I used to take Diclofenac for my back pain, but the GP took me off it due to the recently discovered increased risk of stroke and my dads history.

Anyway, thanks again ladies

[ladybird7 in reply to Hidden]

Hi - I have a neighbour (60 yrs ish) who had endo and had a hysterectomy and was completely cured. She keeps telling me to have one, she simply doesn't believe that it's not a cure. I've been trying the diet but it's not working! Good luck everyone!