Recovery hell after Laparoscopy

[Janeylou]

Hi, I am new to this forum, apologies for the long post!

I would really like to get involved with some support groups and talk to others about there experiences. Endometriosis can make you feel so low and like your the only one going through the hell that is brings. I know too well the range of debilitating effects the disease has on every part of life.

The last couple of months have been hell, I have been so low and angry! I have been in and out of hospital, as the endo has wrapped around my ureter and caused acute kidney injury, my function is still low!

I had to go for emergency surgery a week ago, this was my 4th laparoscopy and i know it won't be my last ( i hate this) I had a massive cyst, my left tube and ovary removed and to top it off the surgeon could not get all of it off my ureter and needs an urologists surgeon! I have to go back in a couple of months due to endo spreading to near my kidney. I did not want my ovary / tube out but my lovely body seems to grow me a large cyst on the left side every year! It had to go!

Recovery so far has been hell and I feel so guilty for my son as mummy just not feeling Xmas this year! Where my left side has been taken out the throbbing pain is unbearable.

Now I am full of so many emotions / thoughts - how long will it take for my healthy right side to get attacked, will they be able to get the endo off my ureter? Will it ever end! Silly me wants to try for another child but its probably unlikely to happen and thats so hard to deal with, the range of drugs to keep it bay i do not think work well, also the nasty side effects! I did have the coil for a couple of years i still had tons of it and was in awful pain. I have a healthy life exercise, eat clean, try natural / alternative medicine it just feels like this disease is indestructible! I spoke to a lovely lady when i was in hospital and she had years of it and sounds like the end game is a hysterectomy, I know its likely that I will be facing this in the future.

Just wondering if anyone has experiences they can share? Know of any support groups?

[AllthatGlitters]

Hi Janeylou welcome here, we all know how you feel and you will find plenty of support on this site.

I joined for that reason as gynae issues just don’t seem to be talked about in circles of friends for some reason. Being on here has helped me a great deal as I can ask anything and it’s never a silly question, lots of lovely ladies on here who are willing to help and offer advice.

I have Adenomyosis and away to have a lap for possible Endometriosis, I have had a long journey and been ill for 2 years now. Always suffered with stomach pain however never taken seriously in my teen years, it took me to move away and join a new GP surgery to get a doctor who would take me seriously. I am now 38.

I feel for you as it does sound like you have had a real tough time, 4 laps and still need more. It’s not fair this disease is it.

I have been told I could need a hysterectomy in the future 😏that’s my last option as that also brings problems with it.

I would say to you to focus on what’s happening right now, you say you want another child but it’s your health that counts at the moment. You have one child and maybe get yourself better until you think of another. Don’t put pressure on yourself. I don’t have children, I don’t think I could carry one full term, I have several medical issues and I don’t feel I would cope, I have had to be realistic and realise that it’s not meant to happen for everyone.

I don’t know of any other support groups but there may be one in your local area? You can also phone the Endometriosis helpline and speak to us all on here.

Feel free to PM me if you want a chat x

[Janeylou in reply to AllthatGlitters]

Thank you for kind words & wishes. It’s reassuring to hear that there is support available, agree it can b hard for others to understand. I know many a time I’ve let friends down last minute for a night out due to my endo & it’s not been understood.

Sorry to hear you’ve had a hard time getting the treatment you need. I hope this starts to improve for you.

So hard sometimes to be kind to yourself, staying in the moment, my mindfulness & calm has gone out of the window last couple of weeks! Need to re focus & chill!

I’m hoping this op pain / discomfort passes soon!! I’m getting cabin fever, enjoying Netflix! X

[ChloeV]

Hi.

So sorry you are having a rough time. Endo is relentless and unforgiving. You are doing really well to keep your life going whilst dealing with pain and all the impracticality that comes with it. Having more kids would be great, of course, but you need to look after yourself to make sure you can be as well as can be for yourself and the little one you have.

Be gentle to yourself as often as you can and try to stop worrying about the future whenever you can? I know it is hard when your body is screaming with pain.

I’m 41 and just had a full hysterectomy this year. I worried a lot about the surgery, pain and menopause. So far everything has been ok and manageable. So if this what you are facing in the future, just know that it is a relief once you have had the Endo removed and hopefully not going to get anymore. Now I just have to deal with whatever long-term damage the Endo has caused, it there is such a lightness in knowing it is unlikely to come back and that the constant hormonal/pain cycle is over. It is a fresh start.

My kids have also had a pretty low key Christmas this year and that has to be ok. They have been and will be spoiled some of the other years. If anything they have enjoyed coming into bed with me and watching movies more than any outdoor activities we would have normally planned!

Hope you feel better soon and that you get your next surgery with a urologist organised to help get you on the mend quickly.

[Janeylou in reply to ChloeV]

Thank you for your kind words & Wishes. I definitely need to chill all the what ifs can drive you mad! Concentrate on what I’ve got. Post op madness 😬 emotional time!! Just tough sometimes as you know. It’s nice to chat to others with similar experiences. Also good to hear your treatment plan has been ok & it’s giving you a fresh start.

I really don’t want another op but I know it’s needed, it’s just the after surgery I hate, emotional, pain, cabin fever! Thank goodness for Netflix! X

[zerendipity]

May I ask what method did they use to remove endo lesions?

[Janeylou in reply to zerendipity]

As far as I know it’s cuts out, I know before I had the specialist surgeon they burnt it out.

[zerendipity in reply to Janeylou]

That’s good, excision (cutting) surgery is the right way to deal with endo. Burning will only make things worse.

Also, hysterectomy is not guaranteed to end the endo problems because endometriosis tissue produces estrogen and thus does not depend on ovaries to thrive. Hysterectomy may be helpful for women with adenomyosis.

As for me, I stopped all the hormones they gave me for endo because of horrid side effects. When I took a look at my medical record I noticed that my first endo cyst actually developed when I was on birthcontrol, so clearly it did nothing to stop it from developing. At one point I just figured it’s enough and I’ll try a different approach.

Have you tried CBD oil? It gives me great relief from pain. Just know, when you decide to buy it, look for a reputable source with lab reports so you don’t end up with something dodgy. I buy mine straight from the company website.