Atypical Complex Hyperplasia with Hysterectomy

[Timwah]

Hi All,

Sorry if this offends and I hope that I don't come across like a drama queen as I know my condition is nothing compared to what some have gone through and are going through but I'm just reaching out to see if there is someone or others that are going through or have gone through the same as me. I'm doing my head in at the moment with all the thinking and I was wondering if someone has any advice.

I am 36 and we were doing IVF as I have PCOS and we haven't been able to have kids since we have been together (which is 15 years). We were finally given a Drs name that could help me and we were almost at the egg stage but then they found, when doing a lining removal and polyp removal that I have Complex Atypical Hyperplasia cells in the polyps.

I have managed to get into a trial which involves the Mirena device (and I also got the drug trial branch of this particular trial) so have both those things hitting the cells.
But they are still telling me I need to have a hysterectomy after we finish having kids. If this trial treatment works. They say they are having a 60%-70% success rate and if it doesn't work then I have to have a hysterectomy anyway. I have had my CT scan and all the blood test and luckily have no cancer signs anywhere else.

This all scares me and I really don't want to have a hysterectomy and after years of telling myself you will never have kids and being ok with it, to then be told yes, you can and to be almost at the egg implant stage to then be told you are maybe going to lose your chance, it has really messed my head up. I have tried to google all the pros for a hysterectomy to try and give myself some positives to look for but I have not found many and only ever keep finding negative stuff.

At the moment I can't even be intimate with my husband without bursting into tears and thinking the whole time about having a hysterectomy.

I thought i was doing good and had gotten over the whole being upset part weeks ago after my second surgery which was 3 weeks ago.

Just didn't know where else to look for people who may be able to offer some advice. I feel like I have the cancer you have when your not having cancer and not sure where else to look. We lost my husbands mother 2 years ago to Ovarian Cancer then a close friend 3 months after that to Brain Cancer and I think I still have all that in my head too.

If this is the wrong place to do this could someone point me in the right direction?

Thanks in advance!

[Katekat]

Hi @Timwah and welcome! 

Your post does not offend at all, we are very glad you have posted. No one person's experience will be exactly the same. And all questions, if you have them, should be definitely be asked.

Has anyone out there had any experience with Complex Atypical Hyperplasia? Or are any of our members who may have had a hysterectomy, experienced infertility or PCOS, able to offer any insight on Timwah's experience?

I cannot begin to imagine how you must be feeling Timwah The trial you have gotten into sounds amazing. There's a large community here and I hope you are surrounded by friends and family!!! 

As a first step, I'd suggest you chat with your GP about support services available to you. Also, have you spoken to your specialists or treating team about your fears? Is your hubby also aware of the way you've been feeling? I know it can be hard to open up 

Some other services that might be good to explore:

• Women's Health Queensland
• 13 11 20 (Cancer Council)
• QLD Centre for Gynaecological Cancer Research
• PCOS Association of Australia

Sending you hugs and love 

[CaptainAustrali]

Hey There

You seem like a really sweet and empathic person, I hope you can find the right balance to face this and move forward.

I can't remark about a hysterectomy, in fact I would cautiously tiptoe through pregnancy and anything womens-health related because there are some things a guy just can't understand.  But I do know about loss, fear and grief - which is what I wanted to briefly write about.

It sounds like you're getting blind-sided from time to time by grief .. unprocessed emotion about the idea of future loss/uncertainty/pain/risk.  My advice is pretty simple.  It may be bad advice, and if it doesn't fit for you, I apologise.

Tackle it head-on.

I'd suggest that it's better to process everything from a place of strength in the hope that it might reduce getting blind-sided by grief/fear when you aren't feeling strong at all.  I'm sorry again if this comes across as bad advice, or somehow superior or preachy, it's meant with compassion.

I think sitting down one afternoon when you are strong, and breaking everything apart - basically the big suitcase marked "worries", opening it up, unpacking and looking at everything, then repacking it as neatly as you can.  When you repack it, try and keep the good things and bad things separate.  Keep and hang onto the beautiful things in your life.

The only other advice I'd suggest is to communicate to your partner.  Fear is isolating & grief is deeply personal, so it's really easy to curle up into a ball and assume nobody can help or understand .. but if you explain to your partner, for example, that love-making is distressing with this hanging over your head, but on the flipside of that you need contact, to be held and cuddled .. well, maybe love can find a way.  (But if you don't articulate it, there'll be confusion, a frustrated desire to help, additional unnecessary stress).

Again, I'm sorry if this isn't useful, but for me personally - a simplistic process of breaking things down and putting them firmly in their place was really useful in dealing with a potentially terminal cancer diagnosis and the horrible fight that followed.  Cancer free now, and looking back, I'm pretty confident the approach I took was healthy & right for me.

I just hope there's something in there that might be useful to you (or even someone else who comes along and reads this), I can tell you're suffering and really sympathise.

Last thing:  there is help out there in the form of counsellors who can listen and guide, if you talk to your doctor/hospital contact about it, all kinds of stuff from dealing with anxiety to coping with grief, professionals who can listen and help.

[Kristar]

Sorry to hear your story. I am currently in the next stage from you. I too have PCOS, hyperplasia & other associated blood conditions & have struggled with weight & fertility my whole life. I recently turned 40 & had decided 18 months ago as a strong independent woman I was going to take the steps towards becoming a single parent. I went to IVF specialists who told me to lose weight, get fit & healthy, get a d&c & then we could start the process. So I did just that. I've lost 30kg in the last 9 months, my bloods are great & I had a d&c on 2nd March 2018. I had also saved all the money for my IVF treatments & associated costs, so I was ready to go. Last week I went to the clinic for my results and last clearance & was told it could no longer happen. I have CANCER! At that moment your life shatters & you realise everything you have been working for has gone. I met my oncology team today & I will have a full hysterectomy in 2 weeks.

The roller coaster of emotions are normal & what you are dealing with is all a part of the stages you go thru. 

You are lucky enough to have a partner - hold him tight, cry on his shoulder, talk to him. He will be experiencing emotions as well and you will both need each others support. I don't have anyone to give me that big bear hug, & I have never felt so alone in my life.

I too had a Mirena inserted & unfortunately it didn't agree with me. Try it, & stick with it if you can handle the side effects. It will protect your uterus & increase your chance of maintaining a pregnancy when you try again. Unfortunately for me I had the Mirena taken out after 3 months. 

Maybe once the emotions & stress of trying to get pregnant take a back seat for a while, the intimacy with your partner will become more enjoyable & you will want to have sex with him.

One thing to think about is that estrogen feeds hyperplasia, PCOS is a double whammy on top, but stimulated IVF cycles are adding more hormones to your system & these hormones feed uterine/endometrial cancer. 

Don't leave it too long to start treatment. I wish I could have done this 3 years ago, but now I face reality of life as a single woman with no kids, having a full hysterectomy & surviving cancer! As a single woman there are no other options for me regarding children as Australian laws require me to be in a relationship for at least 2 years & I'm now in an age group of being not an ideal candidate!! You may still have other options so explore them all, & keep going until you have looked under every rock....

Good luck with your journey