34 but feel like I'm 80!

[NS1982]

I have suffered with endo for many years. I had a laparoscopy done 3 years ago, they did laser on the tissue that was latched to my ovaries and zapped the cysts in my ovaries. I was hoping that was the end of it, boy was I wrong!

I'm a newly wed and the endo is now starting to affect my marriage. Only been married for 7 months and have sex 3-4 times a month. My husband is in to physical activities and told me he feels bored because I am not able to do anything with him. I tried joining the gym but it made my pain worse. I tried yoga and struggled to even do that due to the pain.

The doctors have advised a hysterectomy but I've said no for now. I would love to have children so have made the choice to live with the pain until I am able to do that. It was an easy decision but at the same time, I do feel like ripping out my insides as they affect my day to day. Getting to work is always a struggle, walking or sometimes even turning over in bed hurts. I plan my entire life around this disease and I hate it.

I am on the pill, take buscopan and strong inflammatory meds but sometimes these don't help. I feel the older I'm getting the worse this is becoming, I am 34 and feel like I'm 80.

I guess I'm looking for any advice on diets and exercise to help me beat the pain... willing to try anything at this stage!

[squidgy]

Dear NS1982,

Bless you it is not nice or easy at all. Can totally sympathise with how you feel esp like you are more 80 than 34! It is difficult when you want to try for a baby and so can't really take anything much to help. Otherwise one option is to try a temporary menopause via drugs they can give. I never went down this route and my GP advised me against it to, but that is due to my personal situation. May be different for you. I believe the drug is called Zoladax, and there are probably posts on this site about it. But not an option if you are wanting to try and conceive soon.

My husband and I haven't had full sex for years now and anything sexual occurs if lucky once a month if even that! It is so frustrating for both people in the relationship. The same with wanting to go out and do things with each other and feel normal and have a normal life. Again frustrating for both sides. I hope though your partner is understanding and supportive.

Some people say going gluten free has helped their symptoms. Others it hasn't. I unfortunately have had to go gluten free due to my gp saying I am most likely sensitive to it but could also be due to the state of my body internally and the endo on the bowel, large ovarian cysts etc. I am hoping once all sorted to ease back into eating gluten as I blooming miss it and it is much much easier to be non gluten free that for sure!

I just try gentle walking when I feel up to it. I also have seen and continue to try and see a counsellor/hypnotherapist, who I can talk to about everything and she gave some relaxation techniques too. Which, dont get me wrong do work, but not all the time.

I recently had a 2nd Laparascopy, but this time at at BSGE centre and been told their only way forward with me is to have a big op, which will be risky as my insides are a complete mess and just stuck to each other and everything else. In it they will end up doing hysterectomy, ovaries and tubes out, bowel disection and stoma! I am absolutely petrified. They also wanted to remove the large mass I had on my right ovary during the op I had and the right ovary and tube. However due to risks and things stuck to each other they could only remove 3/4 of the very large mass, couldn't even see my right tube with the hydrsalpinx to be able to remove it and not sure if within the mass some or all of my ovary has come out too. The cyst on my left ovary burst during the op so they had clean that up too. I am just hoping what they have managed to do will help ease things a little. Our next move is to go back to our IVF clinic to see if can proceed with our postponed frozen embryo cycle considering mess my body in or not. Which will determin if the next major op is going to be sooner or later. My recovery from this op is being slow and painful enough dread the next one! But like you say there are a lot of days when I just think "rip it all out I can't go on like this anymore and I will not have a baby."

Can I say though go you for managing to still be able to work and get to it. You are stronger than me that for sure. I have had to give up work, even volunteering posts due to my body and how it behaves but also because of the attitudes and lack of support in the workplace..yup even when volunteering!

Having to plan around our bodies and it interfering in everything is so frustrating and can totally sympathise.

All we can do unfortunately is plod along, take each day as it comes, do what we can, when we can. Take what we feel happy to take to help ease the pains etc and just do what we feel is best. Oh as well as keep badgering the drs too! All easier said than done I know and soo mentally/emotionally draining too not only physical.

I have gabbled on lots now and prob not been much help or even answered your question. If that the case I am so sorry! I wanted to reply to let you know you are not alone, you are doing brill (although know it prob not feel like that to you) just do what you feel comfortable with including re exercise but nothing too strenuous.

Wishing you all the best for your endo journey x

[FaithMarie]

Sounds like my first post here on HU! Look at my profile and have a read, you'll find it sounds like we are on the same boat about feeling old at such a young age. I've migrated from HU to EndoRevisited on FB for support. You need all the support you can get by the sounds of it. The ladies in the group will surely be able to provide that. X