hysterectomy options and advice

[ashie]

i have a bleeding problem which hasnt been found or fix (even though so much testing and medications since 2008).
ever since having DS1 its been happening, and only stops when utd lol.
every case i hear similar to mine is the same result a hysterectomy.
i am not finished having kids i want one more (but that will mean 4 in a 4 year period) and try to get dh to talk about this he doesnt say much (but he wanted the snip but may as well i get done to will fix those both problems)
i have researched this i think i would like to keep my ovaries and cervix (defently ovaries cause keeping your own hormones this much better option)
i've already had 3 c sections, so i dont even know if i can have a fourth, and if we choose to have another can i get uterus removed when having c section?
what side effects is their from having hysterectomys?
i sort of want to be prepared i dont want one unless i do have another child or if we choose not too, i dont want to do something ill regret IYKWIM.
this bleeding problem is horrible, it just spots or flows whenever it likes, (sometimes lucky to get a week off but then its back with force).
i just making things so final, but i also dont know if i could be happy with never being utd again and thats what i tell dh i know its so close together but we wouldnt change our boys and they'll always be close and in age so all those little terrible stages only happen at once IYKWIM.
thankyou for listening and any advice is so appreciated (am going to see my doc soon with a head full of ideas and not going blind into this options and decisions)

[nothing2lose]

I really think this is something for which you need to get professional medical advice. More than one opinion from one doctor too!

But personally, I would be looking at all other options available before even considering a hysterectomy! It would absolutely be my LAST choice for a whole variety of reasons - especially given you are only 24 years old!

Best of luck with whatever you decide, and I hope your problem is able to be fixed without needing radical surgery.

[ashie]

unfortunantly i have exhausted every option been under general which they actually had a look around, d&c's, has numerous testing internal and external, had rare testing for rare blood disorders which all came up normal (which is a good thing as they tested for the c word). been on every contreceptive, meds so clot, to stop bleeding, tried antibiotics, and iron short (which one of my sides is covered in iron stains!).
they said maybe a ablation but it only lightens bleeding doesnt stop things (so much research to find its higher than 50% it wont work for me not a risk i took) and thats not reversable too (have to have the kids i want to have to have that preformed) and thats the only option many of doctors (from all the doctors they've all suggested it). they think it MAY be cause an overstretched uterus which their is nothing you can do, i stretched more than i should from have my frist 2 decent sizes (for my height and weight) and polyhydraminos (sp?) i was so big my biggest had to be born a few days early from a scheduled c section.
i have mucsle seperation and i been told i can get that and loose skin repaired but taking the stretched skin leaves me with no skin to really stretch with another baby so their is a few things i would like done after all this.
it runs in my family being unusual, my sisters and i have heart shaped uterus's, my mum has a platapoid (sp?) pelivs, i have two holes (a vaginal septum which instead of one side being closed off their both open), tilted uterus's etc. so its no real suprise.
i know at 24 you should have to be making these decisions, but how much money i've speny trying to fix things and having to pay for pads, medicine, ultrasounds, etc its so costly. not to mention i cannot go swimming in summer. i have looked at so many even seen the best gyno in the area and i had him suprised. i just dont want this hanging around until menopause and even then it may not go away? my uterus looks good cervix fantastic just had a smear and all clear (never had a bad smear).
not a fun decision and certainly one i did not think ill have to make but life has not been the most fairest to me. and i am so glad at least i've had the chance to bring beautiful babies into this world.

[Trillian]

I know you are looking at keeping your ovaries, but I would expect that you could still experience menopause symptoms? Then there are other issues associated with that like vaginal dryness etc. They are only fairly minor things thought and honestly, I reckon your quality of life atm living with this condition would be far more debilitating than any of that kwim? Are you sure though that the problem will be fixed afterwards though? I know you wont have the bleeding which will be a relief in itself, but they haven't found a cause for it, so you still may have some issues? Either way, it is a huge decision to make and I hope you are able to work out which is the right one for you

[ashie]

Bumping this thread as I'm considering going forward with the hysterectomy this year or sometime next year (few other plans to sort out first and then wait times etc)
After 6 years of this problem I am fed up (3 weeks out of a month are af and its worse and heavier thanks to getting my tubes tied!)
So I am looking for info from others of what to expect (thinking best option would be for uterus and cervix to be taken unsure if they could do it via "down stairs" as I have a vertical septum making it two canals so to speak. So could be more tricky)
What options, recovery times (dh said he'll take time off if needed specially with four kids, kids going to school etc)
What complications could occur, and anything else I should look into and know before going forward and see my doctor and taking those steps forward.
It's a huge step which I hope may be the right one, other doctors I've seen have told me not much more they can do and to expect this to keep happening for years to come (horrible their isn't an answer but at least they are honest with me instead of lying or sugar coating things)
Cycle has gone crazy not regular since ds's birth (I got af back at 8 weeks)
I am keen to be somewhat normal again , wear anything from my wardrobe (specially summer I've been stuck wear only a select few pieces of clothing) been able to go out without worry, and go swimming!!!

[Trillian]

You should watch this video Female Anatomy Video, sex, orgasm, post-menopausal hysterectomy, uterus, video, hersfoundation.org . It's brutally honest about what a hysterectomy entails. It is on the side of being anti-hysterectomy (and for good reason!) but it's important you watch it so you know how this will affect you because gyno's will not tell you this stuff. They sell you the *good* points - no more periods, no more babies and hey, if we take your cervix you won't even have to worry about cervical cancer anymore either. I'm not posting to convince you not to go ahead with it, but just so you know what will happen and what you *might* experience afterwards. The HERS Foundation that made this video does a lot of work with women post-hysterectomy and helping them deal with the health issues they have had post surgery. So they are advocates for not having the surgery but their information is unbiased and something you won't get from a Dr. Good luck with your decision.

[AnyDream]

Tough decision, and certainly one you shouldn't go into lightly, because of the possible permanent side-effects. FWIW a friend of mind used to work in a pathology lab & 95% of the uteruses that came through had nothing structurally wrong with them at all (ie - they were not the cause of the problem).

I dont know what specific treatments you have already had, and there may still be other less drastic options for you. Get another opinion from a different gyno, ask for recommendations or look for someone who operates in a best practice framework (hint: consultant at a tertiary level hospital or teaches at university is a good sign they are expert in the field). When you see them, ask specifically what options other than hysterectomy there are, and look for signs that they are patient-focused (ie listen to you & give weight to what you tell them).

Treatments can include: oral contraceptive pill (several different types), or other hormone pills, implants, injections, vaginal ring or IUD. I know you've tried a few things, but a different combination of things might work better than a single thing. There are also other surgical procedures, like crimping off the offending blood vessel(s) or removing the lining of the uterus that may work well for you.

At the very least, after this amount of time, they should be running another full set of blood tests - check all your hormone levels (incl thyroid) as well as platelets, clotting factors etc in the blood. Another specialist may have access to better imaging equipment to detect other abnormalities (eg fibroids) that might have been missed earlier on. After all of that, there may be some new information which can inform your treatment.

Finally - in the absence of another explanation, give traditional Chinese medicine a try. They have some fantastic herbs for hormonal regulation (often used to stabilize menstrual cycles in order to get pregnant) - you will know after 2 or 3 months whether you are getting any benefit from them.

[Footsteps]

Have you tried the mirena? Xx

[ashie]

Thankyou for all the wonderful advice I really appreciate it xxx
I've tried multiple pills, the implant (no no to mirena as uterus shape), depo was refused as most likely causes more bleeding. I've had many bloods taken (they checked all mentioned as they thought it was blood disorder) I had swabs, went for an op so they could have a looksie (all clear its how they found septum) my last c section was done by a professor at a university so he had my uterus and ovaries out for the tubal (nothing wrong got all clear at 6 week appt)
Ablation is an option but won't stop bleeding entirely (they've flat out said it will lighten but you can still spot for many weeks as usual) its only mainly done for heavy bleeding to lighten, d&c had been preformed before which didn't change anything (only good thing is I felt like a had a good nights sleep lol)
It only started after having ds1, only stops when I'm pregnant, and then its back again until next pregnancy (which after 4 kids and c sections anymore isn't a great idea)
I've also been on multiple medications to try and stop it (can't remember names but one was for clotting and stopping bleeding but didn't work)
I've done a bit of research and seen multiple people for advice and it seems their are alot of abnormal bleeding cases that are unable to be solved.
I know of someone who is having one soon preformed so she is keeping me up to date when her op happens recovery etc.
I will look into more and watch and read all info that has been given to me so I am aware of everything.
Af is due again any day and oh I dread it, it can be so heavy I even wore 10 maternity/overnight pads in a 24 hour period which you can imagine leaves you exhausted and with little ones you can't feel wiped out, and I need to be able to function and race around. I don't think I will settle for spotting for the next 20+ years if that's the best result they can offer (that's really quite a long time and expensive too)
Sorry to ramble my thoughts just alot to think about (which of course it's not a decision to take lightly) I have a little while before making any final decision so need a clearer mind space to make it.

[Trillian]

It's a difficult decision to make, no two ways about it. What it comes down to is you having the best quality of life you can get, any way you can get it

[ashie]

Thank you for the support, I've watched the video and had a read through the site. Very useful and informative if I do choose to go ahead I can arm myself with many of questions and other helpful advice.