Hysterectomy.......too extreme??

[Emjay-75]

Hi everyone, I'm a newbie to this forum...only discovered it today but omg how useful & informative! I was diagnosed 12 years ago with endo after a lap also showing 2 chocolate cysts on left ovary. Prior to a course of ivf I had the cysts drained & had prostap injections to keep down regulated for going into my first cycle (which failed) then a second brought us huge success & I had my little boy (now 8.) After being told I would never conceive naturally to prove everyone wrong 4 years later my little miracle daughter arrived (now 4!!).....sorry for waffling a bit but I wanted to give a bit of history. Needless to say my symptoms were very much kept at bay by having the babies but have got gradually worse again over the last year. Reading a lot of the entries on this site has made me realise I've got off relatively Scott free by all accounts....well up to now anyway. I had a gynae referral in November following a fair few months of pain & discomfort & to my surprise one if the first things he suggested was a full hysterectomy! When he saw the complete look of horror on my face he then said I could try depo provera or prostap (that he said can only be given once in a lifetime & I remembered I'd already had!) Nothing else what so ever has been offered. I didn't go for any of the options at the time. I've considered a hysterectomy but I just think it's too extreme. I'm 38 years old & although don't want any more children to me this is a last resort. I've seen a different gp today & she's given me cerazette to try in the first instance & if I don't get any joy is going to refer me for a second opinion. Am I doing the right thing? I would really appreciate anybody else's thoughts or opinions on this. Many thanks.....

[Chrissie66]

Find another consultant. So long as your bone density isn't compromised, you can have as many courses of Prostap in your lifetime as you and your consultant are happy with. If he's making mistakes on that level I wouldn't place any trust in him when he says hysterectomy is the way to go.

Besides, hysterectomy does not cure endometriosis. It might give some short term relief, but that's probably more the fact that the endo has been cleaned up while they are in there. At your age you'd have to have HRT which is like spoon feeding endometriosis. What is he going to suggest when you've had your womb and ovaries removed and the endometriosis comes roaring back anyway?

[Kirstyferg]

Hi i am only 28 and waiting for my total hysterectomy date i have had one little boy (almost 3 now!) against all odds and cannot go through any of it all again so my consultant has had me on zoladex for the last 6 months which has transformed my life! This replicates how i would be in menopause post op and i have to say yes its daugnting but if it means i get my life back its well worth it! Good luck xxx

[Scooteeder]

OMG! Your Consultant sounds pretty much as AWFUL and INCOMPETENT as my first Gynae Consultant was! GET RID!!

I started out in 2002 with symptoms (I'd had period problems as a teenager, many years ago, but they were NEVER investigated fully,or explained). I wasn't referred to a Consultant until 2006. He was USELESS. First, he misdiagnosed me with Polycystic Ovaries. Then he failed to treat even this. He was hardly ever present at appointments I was supposed to have with him (constant long-term sick - boozer - died recently of liver failure - now work that out!!). I had informed him of my difficulty in conceiving, as well as a range of symptoms including pelvic pain, bloating, abdominal pain, lower back pain, upset stomach, water retention, heavy and irregular periods... His response was to write in my medical notes that I could not conceive because of "anxiety". Anxiety! Since when did "anxiety" cause heavy periods, spotting, and pelvic pain? Besides, the only thing in my life making me anxious, ironically was HIM!

The only thing he ever really advocated was Hysterectomy. In a most dismissive manner. It was as though the word just fell of the end of his tongue. Other than that, I could go away and mask the symptoms by taking the Pill! NO thorough investigation. No tests. NOTHING!

2010, in desperation, I sought a second opinion. Under a new Consultant in 2011 I had my first lap - it confirmed Endometriosis! I have since had 2 further laps, and am due another in March. I am now being treated at an Endometriosis Specialist Centre, and the difference is huge. My Consultant is polite, and far better to talk to. He outlines various options for me, discusses the pros and cons with me, and allows me to make my own decisions. Furthermore, he acknowledges limitations in treatment - by his own admission, Hysterectomy is NOT necessarily the answer. Endo can still be present AFTER this procedure.

I really DO think it would be a good idea to get a second opinion, and to change Consultant. The one you are with sounds most unhelpful. Hysterectomy is a BIG operation, with considerable risks. It is not to be rushed into; especially when you have not even explored other options. You NEED to feel supported by your Consultant, and to be able to talk openly and honestly with him/her; not to be "fobbed off".

Now, I cannot say for definite why your Consultant is acting this way... after all, my reply to you is only my opinion, so isn't necessarily correct... but there is a clear sign they do not have your best interests at heart. Maybe they think because you already have kids, you are no longer bothered about fertility, so a Hysterectomy is an easy option? Maybe they are one of those outdated "old schoolers" who still think Hysterectomy CURES Endo and other Gynae problems? Maybe they are lazy? Or incompetent? Who can say?

For peace of mind, if nothing else, do try to seek a second opinion. After all, any treatment option that you decide to go ahead with should be:

1. YOUR decision

2. FULLY informed

3. SUITABLE for your lifestyle

4. MINIMAL risk

I truly hope that you are able to sort something out, and I wish you all the very best. If you ever want to share experiences, or advice, feel free to e-mail me ([e-mail]).

Best wishes,

Elaine.

[Emjay-75 in reply to Scooteeder]

Hi, thank you so much for your reply, I can't tell you how useful it is to speak to or read about others with the same probs. I've probably learnt more in the last 24 hours than in the last 12 years!

I wonder whether these consultants worry whether we'll be a constant drain to the nhs so think long term it would be more 'cost effective' to cut us open & take half our insides out! I was told that because ultimately the ovaries are the route of the problem that without them the problem would be solved! I now realise how ignorant this was!

Well I'll definitely take the advice & seek a second opinion. As I've started on the cerazette I'll at least stick with it for 3 months & see how it goes.... I've heard mixed reports so time will tell.

Many thanks again.