Hi everyone, I just joined up as I have been laying in bed googling all night since I can't sleep. I am wondering if I am in the wrong place. I read a lot of helpful post but after I signed up, I'm reading a lot about cancer. I do not have cancer (and I hate that word) but have had reoccurring endometriosis. I had laparoscopy in like 2003 or so. They said it was really bad but they were able to clean it all out. Afterwards I took a series of shots to prevent it from coming back. These shots put me through a premenopausal state & I thought it was nothing short of the devil. 😉 Few years later, it was back again. This time we decided to go the hysterectomy route. I was able to keep my ovaries & I thought this was the answer. Over & done, never have to suffer this again. Not true.. I had pain & problems for a couple of years now. I just dealt with it, nothing that should be causing this. Little did I know even after a hysterectomy endo can come back. Yesterday I went in for another laparoscopy. They wanted to look around & see what the problem was. Well of course endo was back & had attacked & covered both ovaries. There was no saving either of them. I was super sad, but it is what it is & whatever it takes to get me healthy again. Now, I'm just wondering when will I be normal again. The pain is not joke. I'm trying to stay on top of pain control but its whipping me. I feel like a total wuss. I'm not even 24 hours out of surgery so I'm hoping I'm stressing way prematurely. If anyone has any advice or tips, it would be greatly appreciated.
New member: Hi everyone, I just joined up as I... - My Ovacome
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Oh my, wee scone what a time you've had. I can't offer any advice just loads of hugs & sympathy & I hope once you recover from your latest surgery you start to pick up & feel better.
Lv isobel from Scotland xx
Hi and welcome. What a lovely photo you’ve shared with us, it’s always nice to see the lady behind the post.
You’ve not had the best of times have you? The big thing most of us here have in common is the lack of our ovaries, uterus and often the omentum. The vast majority of us here have had or currently have ovarian cancer or support people who currently have it or have had it. I know what you mean about not liking that word unfortunately, however, lots of us have had to take it on board and deal with it.
The post op pain isn’t much fun. I had an IV morphine drip for 3 days then oral pain killers for a couple of weeks after my hysterectomy, it takes a while to recover so you seem to be doing quite well for only 24 hours post op.
You are more than welcome here but there will be forums like ours for ladies with endometriosis who understand your problem better than I do and I’m sure you’ll find one if you search healthunlocked.
Good luck with your recovery ❤️Xx Jane
Thank you so much. I will search that now. Best of luck to you❤
Hi Anna,
This is exactly where I was 17 years ago, same problems and had to have everything removed.
Now I'm on this site because I have stage 4 overian cancer, I know it's strange having this with no overies but I have.
Make sure for the future you have regular checkup and CA,125 test.
Don't let anyone fob you off just because you have everything removed, because you can still get this awful disease.
There is a site for people with endometriosis where you will get good advice and information, as this problem can occur anytime.
Let me tell you your better off without these organs if you don't need them anymore and you will feel great once you get back on your feet and your pain free. You look strong and amazing, you will be better than ever after this, I know you will and to be pain free you won't believe how good you feel.
After all these years of problems you will begin to enjoy life a lot more.
Delighted for you all is clear.
These is always someone to talk to here, a great bunch of people.
Hope your back to normal real soon, and you will be jumping round the garden.😁
Ann Nora 🍀
Thank you so much for your reply. I am so excited to know what a normal life is kinda like. Now with you, just wow. I would have never thought you could get ovarian cancer with not having ovaries. Just like uterine cancer & cervical cancer, I just don't worry because I don't have those parts. Now I see that is so far from the truth. I am so sorry this has happened to you. Good luck sweetie & again thank you for that information.
I too had everything out except one ovary as my endometriosis was very bad. 15 years later I was diagnosed with ovarian cancer. I not trying to scare you but it was one of the questions they asked me after my diagnosis of cancer. Endometriosis can go on to cause Cancer of the ovaries etc. I guess if you are vigilant and forewarned you will have regular checks and scans to watch for anything to happen. This cancer seems to come on in your early fifties but I have met and heard of people with early presentations. I wish someone would have warned me, as I would have been more proactive and now not be fighting for my life with this horrible disease. Now sleep easier you are going in the right direction. Look after yourself. Sharon
Thank you so much & oh my goodness. This is the second response today about ovarian cancer. The first lady said she had her ovaries removed & still ended up with it. She too told me to stay on top of this. What are some of the test & things I should continue having done to check for this? I wish you all the best & you keep fighting. Praying for a positive outcome for you.
Hi, do please bear in mind that as almost everyone on this site has been affected by ovarian cancer, you will find disproportionately more here who've had endometriosis & developed ovca. Having had endometriosis/ fertility issues though is recognised as one of the risk factors (of a number). It's good once you've recovered to check out one of the main charities (Target Ovarian Cancer, Ovacome, Ovarian Cancer Action or Ask Eve) to be aware of the symptoms etc etc...They mostly all also have free helplines now staffed by nurses if ever you want to talk directly to an expert but I hope you will also be able to see the bigger picture, which is that you will more likely not be affected!
Good luck with your recovery, take very good care of you.. Sx
I would think you keep a close eye on your blood counts. They measure it with a CA125 Test. Then you can have transvaginal scans, or CT scans. Watch for bowel changes and bloating. Don’t let unexplained pain go on for too long. Let your physician know your history and don’t let them flip you off. Be your own advocate. I know many of us were misdiagnosed as I was. I had hormone treatment for menopausal systems and think now that was a mistake. Stay in touch if any of us can give you any more advice. Regards Sharon
When I saw your photo my heart sank as you look so young, so I was really relieved to read you don’t have ovarian cancer. But having said that you really have been through the mill with your endo, hysterectomy and ovary removal and I don’t think you should feel a ‘wuss’!
Give yourself all the time you need to get over the surgery and hopefully you will feel a lot better. I sincerely hope you won’t go on to have any problems later on but knowledge is power and it’s essential to keep on top of any symptoms and not let yourself be fobbed off as the others have said.
Wishing you health, happiness and a pain-free future!
Love, Madeline xx
New here. In a bit of a pickle, to say the least!
Ovary removal
Has Anyone out there got 2 unrelated cancers at the same time, or heard of anyone else having this problem
HRT needed??
What level should CA125 be after total hysterectomy & bilateral salpingo-oophorectomy?
