Feel like I have too many decisions to make.

[MrsJaffa]

Hey ladies, sorry for the long post.

On the 9th of August I went in for what I was hoping would be a fairly substantial excision surgery with the potential for bowel resection but woke up in recovery to be told that they had drained two massive cysts on both ovaries, one of which was 8'' and basically exploded when they touched it, and that my bowel had been detached from my abdominal wall. Apparently things were different than the 1st (emergency) lap and various tests had suggested. My ovaries are still attached to the bowel and the body of the cysts are still in place, apparently these are too big to be dissected from my ovaries just yet. I still have multiple endometriomas everywhere and my rectum is stuck to my uterus. My womb is also displaced although less than expected. At least the disease to the bowel was less than expected. The coleorectal surgeon has advised she does not want to separate the rectum/uterus until some treatment has been completed.

My consultant has put me on Zoladex and Livial to hopefully shrink what's there and stop anymore growths and will go back in to dissect the body of the cysts from the ovaries in 3-6 months time. They will also look to separate my rectum as this will improve my quality of life however, the coleorectal surgeon has advised that this could effect my ability to carry a child. I'm 34 and my husband and I have not yet started a family.

My consultant has also referred me to fertility specialists to start the conversations but I will need to lose just under 3 stone and have the cysts off the ovaries to even be eligible for IVF. I'm going to see her again in a month's time as I will need my hormone injection and I think she wants me to digest everything that's happening.

The problem is I don't know what I want to do. Having children was never a huge desire but one I don't want to close the door to. My hand is being forced now. My life just feels like it's been turned so upside down with all this that starting something like IVF with the potential to cause so much heartache feels stupid but at the same time I don't want to look back in the future and feel like I missed an opportunity. My husband and family are incredibly supportive and only care about my quality of life but I'm very conscious that they are going through all this with me. They have to do all the waiting during surgeries and suffer the same disappointments as me but equally I don't want to deprive them of the chance of us having children.

I know that due to the aggressive nature of my endo I can only manage the symptoms with hormones for a limited time and that eventually we will need to look at the removal of all or some of my reproductive system. I also know that I'll basically be menopausal now until that happens or we have a successful round of IVF and that my/our old life is gone.

I feel awful and completely lost. I know no one can make these decisions for me or change things. I guess more than anything I needed to get this off my chest but if anyone has any advice it would be welcome.x

[Starry]

Big hugs. My heart goes out to you. I just wanted to let you know that I am thinking of you and am so sorry that Endo is wreaking havoc on you so horribly. Xxxxx

It doesn't really sound like you've many options which is tough to deal with. It sounds like the bowel/ rectal surgery will help once they are able to do it. I am just recovering from bowel surgery to remove nodule and adhesions that were attach my bowel and vagina. It's early days and I lost 4 cm2 of my vagina which was too damaged to rescue but I am steadily if slowly improving.

It's a real dilemma about fertility and a lot to come to terms with emotionally right now. Time will help you absorb things and know what is right for you. Perhaps counseling might be helpful idea and give you to talk it all through with a sympathetic ear...?

For what little it may be worth. I am 42 and was not in a position to ever have children. Endo aside I have a totally fulfilled and rich life with a beloved husband and a fur baby of the canine hound variety. I make the most of the freedom that not having kids brings bith financially and time wise with holidays and treats and hobbies . I feel worthwhile and get self esteem in my career and volunteering for a charity. My life is good and I don't feel I have missed out, just taken a different path in life. This may be little consolation now. But hopefully it shows there is potential future hope for you to have a rich and happy childless life if that is what were to happen, or that are things like fostering, kid club voluneering and adoption to explore if you came to feel that life experience with kids was vital for you to be fulfilled.

Hope sharing this helps just a little as you go through such a horrendous time.

[MrsJaffa in reply to Starry]

Thanks Starry, I really appreciate your kind words and the benefit of your experience. I do think it's incredibly cathartic just to say things sometimes especially to people who understand the issues.

I'm so sorry that you too are having an awful time but I'm so glad that you are on the mend from your last surgery. It's horrible when they take things that should be there.

My appointment with the consultant came today and I'm going to see her on the 18th of September so I'll discuss possible avenues for counseling. My GPs pretty useless at these things so I guess that will be the best bet.

I have a lot to think about over the next 5 weeks but at least I can digest everything and talk it through with my husband properly. Whatever happens we have each other and i know we will have a wonderful life together as you do with your other half. Thanks again for reminding me of that.x

[Maxi72 in reply to MrsJaffa]

Hi

You have my heartfelt sympathy. You need time to come to terms with the surgery findings. I'm on a drug similar to Zoladex and after 17 years of pain which ended in motor nerve damage in one of my legs, somebody started to consider endometriosis and I finally have some relief. If you get anything like this relief on Zoladex, you will be in a better position to think straight about what you want. When you're in so much pain, your only immediate goal can be to be pain free, whatever the cost.

Like Starry, I am also 42 and have no children of my own but there are children in my life through friends, family and career. I didn't plan it this way but I cannot change the past- I was not detected and felt my chronic pain would prevent me from being a good mum. My first laparoscopy will be in October! Quality of your life right now is everything. I really hope Zoladex helps you both physically and mentally.

Lots of love. X

[MrsJaffa in reply to Maxi72]

Thank you Maxi72. I appreciate you sharing what you have been going through and I'm so glad you have finally found something that's giving you a break from the intensity of the pain. Fingers crossed you get some answers at your lap and that you have a speedy recovery.

Good luck with everything.xxx

[Heloo85]

Im in a very similar position. Ive not even actively tried to get pregnant (although for years ive not actively tried to not get pregnant. Kinda knew for years i was infertile) and i was offered IVF at my post op appointment without asking. I would definitely have to quit smoking though. Im 32 no children. Partner is 40s and 2 children and doesnt want more. Im not fussed about children, although i dont know if thats something ill live to regret? Its difficult when youre told you cant have kids. Even if you aint sure if you want them. But then again, i have a friend who in a similar position to us went through 3 cycles of IVF on NHS and it failed. So theres no guarentee there! Its a very horrible position to be in! Big hugs. Just thought id reply as youre not alone!

[MrsJaffa in reply to Heloo85]

Thanks Heloo85. It does sometimes feel very lonely when you are going through these things. It's great to have a community like this to talk to though.

That's what I meant about IVF sometimes being so heartbreaking. A lady I was in hospital with last week was in her late 40s and had 6 rounds the last of which resulted in an ectopic pregnancy. She gave up after that and by that point they were obviously paying for it themselves. That's why the decision is so hard. All this is enough to go through without that too and it's not just my heart that will break. I'm an only child so my Mums only chance at grandchildren. She is not putting any pressure on me at all but after years of conversations I still feel it. Plus my husband keeps asking all the questions about fertility which makes me think he's actually more interested than he's letting on.

I'm gonna give myself a couple of weeks to get to grips with what's happened and then my husband and I can sit down and have a talk properly. At the moment I'm feeling like a very taught string with all these hormones so giving myself time can't hurt.

I appreciate your reply.xxx

[Heloo85 in reply to MrsJaffa]

Thats it. I can see IVF getting very addictive. Especially the more cycles you have. And its also a very invasive procedure too with absolute no guarentees. And, if it does work, it has a high risk of ending in multiple pregnancies at once! Its a lot to think about. I guess if you can stay real and just stick with the NHS offering, it could be worth it! But no doubt the more it doesnt happen the more youll want it to happen. It is horrible when your choice is taken from you! Councilling will no doubt help if you do or dont go through IVF. But yes it is lonely. Im one of 5 girls in my family and the only one without and unable to have kids! Xx

[Bobbiejane28]

Honey my heart goes out to you aswell, I just want to give all my endo girls a big massive hug. Thinking of you and you have given me such knowledge and support since coming and joining this page. I wish I could click my fingers and give each and every one of you a blessing. I know how your feeling , it's hard i know and you have your own little battle but what I can gain and only see from what you say is you sound such a strong passionate hopefull woman and your husband is lucky to have you and I know you will think your lucky to have him, but the sounds of it you have such amazing family support and not many people have that. I have my fiance and my two kids and that's it, I and my partner for personal reasons don't have the family we would of liked, so we only have other, and going through this illness/disease and all the medical problems and only having him too turn too he is my hero. But like you have said to me in my previous messages , keep hope keep fighting keep going it will

be worth it in the end. Take every step as it comes and I'm more than sure you will get your happy ending. all the best my love take care and keep positive. Xxxx