Adenomyosis and Endometriosis and PCOS!! Feel doomed at 31!!

[shali1981]

Hi has anyone else been diagnoses with all three above? I am only 31 and it has taken them 15 years to diagnose Adenomyosis also. I am now faced with 10 years of more pain and more heavy periods due to my age they won't offer me a hysterectomy. Can anyone offer advice about treatment that you had. I have been offered prostap and another lap as I have a lot of scar tissue and adhesions they are reluctant to do it.

[Sarah1979]

Hi

What area do you live in? I'm in the UK and am 34. I'm having a total hysterectomy on 13th August 2013 for endo.

I'm really sorry to hear that you're having such a hard time with it all. My consultant was really reluctant to give me a hysterectomy and she wasn't happy to do so until I'd exhausted everything else. Prostap was a welcome relief from pain for me for about 5 months (I took it for 9 months) but that just made me more determined that I needed a hysterectomy.

It's taken me nearly 2 years of begging before my consultant finally agreed and I can't wait to have it all taken away.

There are lots of ladies in their 20's that have had hysterectomies. Only you know what's right for you and if its a hysterectomy then really push for one.

I can't imagine having all 3 diagnosis's and having to live with that pain for another 20 years or so!

Change your consultant if needs be.

Good luck xx

[shali1981 in reply to Sarah1979]

Hi,

Thank you for your reply. I know that a hysterectomy is now the only way to go. I have been on every other form of treatment that they can throw at me and now having been diagnosed with Adenomyosis I just feel like there is no point having it all there when it does not work anyway.

We are looking at private consultants now in the hope that I may get somewhere.

Good luck with your op!! xx

[Sarah1979 in reply to shali1981]

I'm convinced that I have adenomoyosis as well. I'm in constant pain. How did you get your diagnosis? My consultant told me thay the only way they can give a definite diagnosis is after a hysterectomy.

I've spoken to lots of ladies around my age that have had a hysterectomy and they have all said that its transformed their lives.

You need to do whatever us best for you. I'll keep my fingers crossed you find a good consultant. I'm sure you will

All the best

Sarah

[Kward1991 in reply to Sarah1979]

I'm actually based in the u.s. but I got diagnosed with adenomyosis during my endometrial ablation last Wednesday because my gynecologist scoped to make sure he got it all and said he kept finding pockets in the back wall even three layers into the muscle. I had already been diagnosed with pcos and endometriosis so we were doing an ablation to try to keep the bleeding down since I typically make myself anemic. Hopefully this helps!

[shali1981 in reply to Sarah1979]

Sorry I am based in Wigan xx

[Cloudyrain]

I love Prostap! Good luck with it!

In reality you need to thoroughly research your options and a hyst is a last resort. There are drugs like Prostap, back to back pill, norethisterone, mirena coil, progesterone, endo diet. Have a look at the main endo uk website and get a few books; i find endo for dummies and live well with endo to be really good.

I understand your want of a hyst but you need to research other options to make an educated decision.

Good luck whatever you decide, it's your body and therefore your decision x

[shali1981 in reply to Cloudyrain]

Hi,

I have tried everything apart from prostap and I have never been offered this before. Due to undergoing fertility treatment. To which we ended up conceiving naturally.

I have done all the research and and I know with now having Adenomyosis that it is the trifecta of women's problems so take the lot!!!

I will certainly get the books though and give them a read xx

[Hidden]

Yes im 21 soon to be 22 and i have all 3 my gynecologist keeps talking about a hysterectomy but i want a family im only 21!

[shali1981 in reply to Hidden]

Wow, 21 and being offered one? This is what baffles me. I was told at 26 that I was too young and would not be allowed one due to age and not having a child. I underwent a lap and dye test in 09 and was informed that I would need IVF to conceive due to having blocked fallopian tubes and only my left ovary which at the time was full of cysts!! I have now had a beautiful little girl and I am unable to enjoy her as three weeks a month I am either like Dr. Jekyll and Mr. Hyde or out of my head on tramadol to deal with pain. Tranexamic Acid and Mefenamic Acid have stopped having any effect due to the length of time I have been using them.

This is why I am so infuriated that at 31 and being a mother they will now not offer me one till I am 40!! xx

[Hidden in reply to shali1981]

yes she keeps mentioning it and bringing it up but i change the subject because i don't want to hear it, I want a family she already knows this but still keeps going on talking about it she doesn't make sense because i asked her if it is possible that i can have a child and she says with fertility treatments so if its some what possible whys she pushing a hysterectomy onto me, don't make sense.

I think she just doesn't know what shes talking about shes supposed to know about it being a gynecologist but seems she doesn't

i think because there's no cure they just push everything onto you (pain killers etc) and when there's not much left to offer they talk hysterectomy

ive talked to many girls who have been told they would be unable to have children and they have gone on to have them.

[shali1981 in reply to Hidden]

That is what happened with me but without the offer of surgery. We tried for 8 years to conceive but with no luck. The lap and dye test in 09 showed blocked tubes, but we did conceive naturally in the end. I think it is wrong for your doctor to be pushing if you have told her that you want a family and even if there is a small chance then you should be offered fertility treatment first and foremost. This is why I am now pushing as I do not think is is fair to either my daughter or my partner that they have to deal with these conditions and I no longer want to be in pain x

[Hidden in reply to shali1981]

can they not unblock your Fallopian tubes?

i would like to know if my Fallopian tubes are blocked my sister has recently had a dye done.

I cant even find out if mine are blocked or not or get any kind of tests to see if i ovulate! its a joke

ive done ovulation tests but i don't seem to ovulate all that much. you think the doctors would actually want to help and find these things out but there just not interested!

tbh i think there all useless

[shali1981 in reply to Hidden]

They think that when I fell pregnant I just lucky. The uterine lining is now in my tubes x

[Jenifer1988 in reply to Hidden]

I was diagnosed at 16 with endo and told it was so bad I would never carry a child. I did lose a few but I also am now 27 have 2 kids one is 7 one is 4 I'm having a complete hysterectomy in less than 2 weeks 3/25/16 or 3/29/16 will know date on Monday. I have adenomyosis, pcos, endometriosis and uterine and ovarian cancer. Honestly fertility drugs and even test tube baby is worth the pain. I used good old fashioned tips for conceiving pillow under ur behind lifting ur hips and causing the semen to get "deeper" have a kid then hysterectomy should be something to think about. Oh find a new doctor... One who listens about your desire to have children. And if all else fails there are so many children who are born with noone to love or provide for them so adoption is an option..

Best of luck to you young lady...

[Music1 in reply to shali1981]

Shali1981,

I know you posted this some 3 years ago. But I was wondering, did they remove your tubes because they were blocked - I'm assuming you had IVF? I had the same and was told I'd need my tubes removed in order to start IVF as they were blocked. I'm now 3 IVFs later and still no child. I feel devistated and wonder if I'd kept my tubes whether there would be even just a slight chance I may have got pregnant naturally. You're blessed to have a little girl, and I hope that you have had success with either managing pain or getting your hysterectomy if that is what you wanted. x

[Chrissie66]

I told my gynae about all of the ladies who were being offered hysterectomies at any age as a treatment for endometriosis and she was horrified. Clearly there are situations where hysterectomy is indicated, but as well as not being a definitive cure for endometriosis, it's opening up a whole other can of worms, especially for young women in their prime.

Having your womb whipped out makes sense for adeno but otherwise...it's such a huge, irreversible operation. I have endo, adeno and a huge fibroid along the length of the front wall of my uterus and the monthly bleeding was of biblical proportions until I had a Mirena fitted - it didn't do much for the pain, but the bleeding just stopped, almost like magic, which made everything else easier to handle.

Of course the final decision is yours, but make sure you've considered all of the other options first. In 10 years time they could have found a cure, or at least a more effective treatment, for all of our conditions. But if your womb and/or ovaries have gone, they're gone...

Good luck, and lots of love

C x

[shali1981 in reply to Chrissie66]

Hi,

I have tried the mirena and sadly it did not work. I was still in enormous amounts of pain and bleeding was heavy still. I had that taken out in 07. I have been on numerous pills and treatments and kind of got to the point where I learned to live with it. But it is now affecting everything in my life. My partner is unable to work as he has to have our baby as when my period hits I am useless. We have no sex life to speak of and I am that stressed out that a day does not go by where we dont argue. Why he has stayed is beyond me. But I am blessed with him. His mother underwent the same issues as me without Adenomyosis and she had her hysterectomy at 28, so he has an understanding more than most.

I do understand that gynaes offer this to women who are very young but I think when presented with someone like myself who has all three issues and no successful treatment has worked for any serious amount of time then a hysterectomy should be at least considered. I have suffered since I was 16 with heavy perfiods and painful periods and was diagnosed at 20 with endo and pcos. 10 years of that and now Adenomyosis I feel like I am at my wits end xx

[Hidden in reply to shali1981]

I don't understand why you cant get a hysterectomy if that's what you think will help you when im nearly 22 and being told hysterectomy every time i go to see her, i was diagnosed with pcos when i was 14 i was then diagnosed with endometriosis 2-3 years ago and told adenomyosis last week

[Hidden in reply to Hidden]

Although im getting a second opinion about the adenomyosis and changing my gynecologist because she isn't good for me.

[shali1981 in reply to Hidden]

It is driving me insane. Even more so now I know that women younger than myself are being offered it. I am now looking at private consultants as I do not feel that the NHS are actually looking after me the way they should. 10 years of PCOS and Endo and numerous ops to remove cysts and I have also lost my right ovary, now Adenomyosis it just seems like when I only have one ovary which you want to give prostap to stop working why not take the lot. She as much told me yesterday that the bleeding would stop but due to the Adenomyosis the pain would probably continue xx

[Hidden in reply to shali1981]

but what if you did get a hysterectomy and it didn't take any pain or help at all would you not be disappointed? or are you all set up and wouldn't like anymore children?

sorry just looking at it from a different angle

[shali1981 in reply to Hidden]

If they give me the surgery then all my pain would go. My pain is caused by endo and pcos and now ando. Me and my partner have discussed more children and given the recent diagnosis there is now no saying I would conceive again. We never expected to have Grace so we are more than happy with her!! I want this to be done as the pain and way my life is affected is horrendous and I do not feel like I can be a proper mother or wife xx

[Hidden in reply to shali1981]

sorry but how are you so sure that the pain would go?

the pcos would but how you sure about the endo?

because people have hysterectomy and still have pain.

Have you not considered adopting?

I hope you get all the answers you want and everything turns out good for you. xx

[Hidden in reply to shali1981]

When i get to like 30-40 maybe il consider a hysterectomy, having pcos,endo and adenomyosis im not expecting to have more than one child but if i get one il be happy.

i just don't want to get to 30-35 and still not have a child and it be impossible.

but im most def not having hysterectomy until i have at least tried fertility treatments for sometime and know there's no options

[shali1981 in reply to Hidden]

I understand that. But I have my baby now and I am 31. I am struggling now to be a proper parent to Grace now as I am always in pain, having another baby would just be unfair and put even more pressure on my partner. Right now the surgery is the only way I can see any enjoyable standard of life x

[Hidden in reply to shali1981]

Yeah i was just wondering how you were sure it would help, i understand what your saying im in pain everyday aswel and having a child would be hard because of the pain. If you think it will help it is worth looking into private or maybe see a different gynecologist hopefully it would stop your pain in the future if the pain goes away you could always consider adopting if want more children?

I hope everything works out for you

i wish i had all the answers

sorry i ask so many questions just interested to know as i wonder where i will be and what i might think at 31

[wdwfan1973]

Hi there. Just wanted to add that I have adenomyosis and PCOS too. I had a lap in February and was told no endo was found but have found my pain has lessened since then so something must have been touched/removed. I've had PCOS since my periods began and spent most of my teens in and out of the docs complaining about my heavy periods and pain only to be sent away. My adenomyosis was diagnosed via an MRI scan. I had the Mirena coil put in last June and it took months before I noticed any difference. I am taking less painkillers now. I too have been turned down for a hysterectomy. I cannot have children anyway so figured what's the point of delaying it but my consultant says I'm too young. Surely that should be my call. If the pain comes back to where it was before i.e. 24 hours a day constant, then I will demand the hysterectomy be done - its our bodies at the end of the day and it should be our decision. Anyway, I just wanted to let you know you aren't alone. I hope things get easier for you and you get the hysterectomy done.

Take care,

Annabel x