Gyne has give me 3 choices, hysterectomy, menopause or get pregnant.... but im only 19.

[Rosie93]

I have suffered from endo since i was 15, i am now 19 and i have had two surgeries and my left tube is blocked and my gyne has told me i have 3 choice's, a hysterectomy, menopause or get pregnant and i do want a baby with my fiance of 4 years but were not financially ready yet and im too young for an hysterectomy and my sister got messed up from goin though menopause and she is 23 who suffers from same thing but her's is much worse. Im not sure what to do, my head is in a mess at the min, please help me.

[Chrissie66]

Oh Rosie...

First of all, get a second opinion!

I was given exactly the same advice as you when I was 26. I was told I would never be pregnant and the only option was hysterectomy.

Well, for one reason and another not related to the endometriosis at all, I didn't fall pregnant for five years. But then I did. Unfortunately, again for reasons completely unrelated to the endo, I went on to have several miscarriages, but I got pregnant 18, yes, 18 times. All completely naturally.

You're only 19, you shouldn't be facing such huge decisions. Has your gynae even offered you drug treatment??

Go back to your GP and ask to be referred to somebody else. It may well be that your endometriosis is so advanced that your options are severely limited, or it may 'just' be that your gynae is not sufficiently experienced with endo to know that it doesn't have to be an either/or situation.

Good luck love, and don't accept everything the doctors say as gospel. They're the professionals, but that doesn't mean that there often isn't another way

Lots of love xxx

[cambully]

hi i was in exactly the same position as u and was told the same but i wanted a baby so i told them to jog on and refused all of the meds except pain killers im now 22 and 5 months pregnant so dnt take everything as ghospel. just rememeber tho if u do want children dont go for the hysterectomy or menopause as this will rob u of ur chances u dnt av to get pregnant until ur ready bt if u go for the other options u wnt have the choice of avin children anymore and after years of being told u cant i av kids i know how it feels to feel like tht has been stolen from you and its soul destroying. dont give up!!!! xxxx

[Fletch]

Get a second opinion!

What you have been told ISNT right, especially at your age. My specialist said she wouldnt even think about the option of having a hysterectomy because of my age, and I have just turned 30! So at 19, this is just bad information. You dont have to do anything as drastic as that. There are other options. You just need to see someone more specialised in Endometriosis, as they dont appear to have a clue! The fact that there are still doctors out there that say 'if you have a baby it will go away' is ludicrous. It is a myth! It isnt true! I have read loads of stories from women who still suffer horrifically after children.

Its time to get a new specialist! You dont need to be making such masiive, life altering decisions at this stage. Trust me x

Take Care xx

[hillidoos]

hiya, has your gyny man not suggested having zoladex implants to shrink your endo and give you some relief. This isn't a permanent fix but should help in the interim. good luck

[vodkalover82]

go to see other doctor, having a hysterectomy is not guartared to stop the pain and neither does having a baby, im shocked to hear this is what they have told you, they is more they can try and do for you, im 30 and had it since i was 13 and only found out what it was in 2007 as i had be misdiagioned for years the doctor who done my first op to remove cysts and tissue said it was the worse case he had ever seen and ive never been adived to do any of them,

stay strong xx

[Holly-Francis]

I alco can't believe that is still the first option: First of all, being pregnant or having a baby doesn't help at all, my friend had her most horrid Endo experiences after her first child and it took the doctors years to diagnose it properly. They told her she shouldn't think of having another child for at least two years. A hysterectomy, jeez, it means the endo cells are still growning all over if they don't do anything about it. Be brave, go to a specialist. There are many other options that are not so final.

Cheers

[Zolta]

Get pregnant, I suffered from Endo since teenager, now nearly 29, got pregnant after 3 months of trying after having a lap last May followed by Prostap injections. Though am not in the best financial situation to have a baby, getting pregnant is one of the the best things that ever happened to me. All Endo symptoms gone, I would say to have a child now while you still have the option, Endo can take away fertility. The older you are with the conditon, the less likely you will conceive naturally - I been very lucky. Only have 1 tube and 1 ovary. Love my little already, due in September. x

[staceylb]

on recommendation i bought the book "living well with endometriosis" reading up on endo will help understand your condition and make you feel confident in saying to the consultation or doctor i would prefer to speak to a specialist. i was diagosed 6 years ago and only from reading the book and leaflets on the endo charity website have i really discovered that what some of the doctors were telling me was wrong and stupid. why would i want to have a baby just to stop my endo! hope everything goes well x

[stevieflp]

Rosie,

I can't agree with the advice to seek a second opinion more. Sometimes the treatment you get offered is on a level with the experience of the consultant you see and not always the best.

My first consultant was a gynae advertising that she treated endo. After investigatory lap, she breezed through and told me . . "my dear you have endo, are such a mess inside, best thing for you is a hysterectomy and oophrectomy - speak to my secretary and book in, I can do it in 6 weeks time on [date]" and off she went. To say I was stunned was an understatement which later turned to feeling traumatised.

I will add I have a son and was in my 40s so I did not have the same drive to avoid hysterectomy that you have Rosie, but i was concerned from a medical perspective. Personally, I could not see the point of having oophrectmy and then having to have add back hrt if the whole point of losing the ovaries infirst place was to lose oestrogen and suppress endo. I know there are non-eostrogen hrt's but I had seen a friend unable to tolerate that so knew that was a possibility.

I saw her again and said I did not want this. She said I was obviously overly emotional about it and said to go onto Prostrap to see if menopause sorts me out and then I would feel better about the decision.

Researched this and decided I did not want this type of drug either - what a bad patient I am!

I came across a very informative website of a leading endo surgeon who has a specialist team and offers excision surgery for endo - also advocates keeping ovaries. That all seemed to fit in with how I felt about it.

Previous consultant was going to remove healthy organs and leave endo and relying on me tolerating hrt or suffering old age body-wise early. I would still have endo.

I referred myself privately to this second consultant who did another exploratory lap - fully explained why I was in a 'mess' i,e, stage 4 on ovaries, bladder, bowel, diaphragm, recto/vaginal, uterus (could not confirm adynomyosis but suspected it). Showed me pictures. I still refused hysterectomy and said I would rather take my chance re adymyosis and see if all of the rest of the surgery would make enough difference and he said he would save my ovaries and could have the hyster at a later date if it proved to still cause a problem.

Underwent total radical excision surgery. This is where the whole of the lining of the peritoneum is removed so all seen and unseen endo is removed. My ovaries were temporarily suspended so they did not adhere to the healing peritoneum and my internal organs were put back into their usual place rather than being stuck up and distorted.

I have been endo pain free for past 16 month since op. No nasty drugs except for an occasional paracetamol for normal type period ache (defo not crippling endo) and still have everything in tact internally.

I am just so glad I questioned the advice of the first consultant I saw and hope my experience will help you to see that you do need to question the experience of the consultant in treating endo and what their specialisms are and never be afraid to seek a second opinion and take your time to make a decision that feels right for you.

All very best wishes ad love to you x

[meme2 in reply to stevieflp]

Is there any chance you could let me have the name of the specialist consultant you saw.

My local hospital consultant doesn't seem to know much and I am desperate to talk to someone who can answer my questions before I go ahead with a hysterectomy.

Thanks.

[federica]

HI dear,

a baby is not a good solution if you are not ready, and also an hysterectomy is a very strong decision to make at your age since is irreversible.

Get a second opinion, and explain the this two solutions are too big to make at your age and see what the doctor can propose as an alternative.

I'm taking Cerazette, it's a pill that simulate pregnancy instead of menopause, for me works really good. no periods = no pain.

It has drawbacks as the menopause pills, but maybe it would work ok for you.

Anyway, don't be scared to change doctor and look for other opinions, I changed at least 6 doctors before being diagnosed, had a laparoscopy and when it all came back after 3 years I changed 5 doctors (most private) in 4 months before finding one that gave me the solution that worked for me.

good luck!

[MrsGizzard]

Stevieflp -what is the name of your private endo specialist who did the radical exhision treatment, please?

[stevieflp]

Hi - not sure if we are allowed to mention names but it was Mr A K Trehan. I saw him at Elland Spire hospital but he also practices out of Dewsbury NHS. Sorted my 'mess' out. His website is very informative.

[ginger83]

I came round after having a laparoscopy and was told by the surgeon 'Have a baby preferably within the next year or you probably won't get pregnant'. This was in 2006. My boyfriend wasn't ready to have a baby and I was distraught. 2 years later my husband said he was ready to start trying. It took over a year for me to get pregnant. During the pregnancy everything was fine. I had been told I would need a vaginal delivery to help with my endo. 44hrs into labour I was told I would need an emergency section. My endo flared up as soon as I'd had my baby and so was back to square one. 12 weeks after having my first child I was pregnant again (I was on the pill though). Another lovely 9mths pain free.I ended up having another section and as before the endo returned with a vengence. I'm now waiting to have my 3rd laparoscopy next month. Whatever you decide, it should be your choice and not something you're pushed into. You're the one who has to live with the consequences.

[meme2]

Trust me - getting pregnant is NOT the answer to stop endo. I spend the worst 9 months of pain I have ever had when I got pregnant last time. (The endo just flared up as it was being fed by a different hormone.)

My baby is lovely and a real joy, but my endo is getting worst each month.

I am now waiting to see what my next step is. (Oh to have a endo free life!!)

By the way, many years ago I was told I would never have children because of my endo and I now have two, so hold on in there.

[CharlotteS]

That is what i was told aswell by the 2st lady i saw and its a load of rubbish.. There are specific pain management consultants and medication and plenty of place u need to ask ur GP to refer you! Dont be defeated hun - best of luck to you! x