Advised to take hysterectomy to remove my womb after had colposcopy treatments. Endometriosis and adhesion treated by laparoscopy.

[Otohime]

My lovely gynecologist who had seeing me several times previously who now call me her friend, was cheerful when I went to see her again last year. 😂

I’ve been having smear test at least once a year since my first colposcopy treatment in 2003 and every year is the same.

December 2018 they found endometriosis and adhesion with my first laparoscopy.

By that time everyone could see Ive been repeatedly having problems one way or another.

My both grandparents died with cancer with their private parts and my father had stomach cancer.

They thinks it’s genetic and I think so too.

So I am like let’s deal with it if that causes too much problems. So when I’ve heard about removing my womb was a good idea for me I thought.

But I’m worrying about after effects as I’ve heard some women are suffering from severe depression after they had it.

Other women felt great like a new born baby.

I hope that’s me.

But I’m still hoping I can have an another option. 😀

As I’m worrying if I’ll suffer from severe depression after removing my womb and be a burden to my sons who is 22 and 14 for the rest of my life?!

Recently went to A & E, because of the severe bleeding with clots and the pain.

I’m waiting to hear from gynecologist at King’s after referral from the doctor at GP.

Also I’m trying to be ready by keeping up good diet, sometimes fasting with just water to cleanse my body and doing little exercises like just stretch my muscles at home.

I’m trying anything that I can do to reduce my condition that I have.

I’m trying to think that I have more times to get ready mentally and physically.

But the waiting time is hard for everybody dealing with so many different conditions.

This time really effecting me mentally and trying to beat it.

I would like to hear from you who had hysterectomy to remove the womb completely about before and the after effects.

What should I do while I’m waiting.

What support can I have?

I’ll be very grateful to hear from you.

Thank you

P. S sorry for my poor English.

[Moon_maiden]

Hi

Sorry about your loss. I hope you don’t develop cancer on top of endo.

I had a hysterectomy last November. I had enlarged uterus, many fibroids and endo. The pelvic area feels great, I’m not aware of any menopause effects, but taking Sage.

I had my op by the BSGE gynae, who told me beforehand there would be a bowel surgeon available if need be. Turns out they never had a multidisciplinary team meeting. I would strongly advise that you cover all this with your gynae as I am still left with bowel issues. When I asked gynae if there were any adhesions on the bowel a couple of weeks ago he replied with ‘I’m not a bowel surgeon’, couple of days later he ignored my question about bladder and when I asked if endo left, it was, well now everything has gone and not on HRT any endo will disappear. Research and others experiences show this is not the case. GP has sent a letter to a different hospital endo team. Sarcasm I can do without.

[Otohime in reply to Moon_maiden]

Hi, thanks for your reply.

I’m really sorry to hear yours.

It’s so hard.

I’m usually very strong, happy and positive person no matter what.

Love making everybody smile and laugh.

I can be happy with any little things that I find.

True, sarcasm can be killers especially when we feel weak.

This time somehow effecting me mentally.

I’m actually not so worried about cancer top on endometriosis as I had laser treatment several times in the past already and I know that if treated earlier it’s ok.

I mean it’s like I don’t care any more 😂😂😂

And every professionals I saw, I’d repeated myself when I had blurred visions and bad hearing and tightness around my head and pains in my whole body and my concentration was poor because of all and they telling me everything but not registering into my brain because of it was all bad enough already and top of it everything in English and some medical languages and miss communications and miss understanding and sarcasm and feeling even more stupid.

And my anxiety, paranoid and low self esteem that Ive been dealing with on and off since I came back from A & E last Saturday is a killer to me right now.

I’ve not been able to speak to my lovely colleagues I work with and my close friend.

I’ve been avoiding.

And it makes me feel even worse like I’m not normal.

They knows roughly what’s going on with me because of I said sorry not being so friendly and did let them know that I’m in a bad way.

I kinda trying to imagine what it’s like when my womb will be gone.

I hope I won’t suffer from the severe depression.

I feel worse because of I have no families to support me and my sons and a bit hopeless.

Then the people who wants to support isn’t even my family back in Japan but my colleagues and my friend here, I feel so embarrassed.

Also the lovely gynecologist.

But they are not our family like I wish they are.

Sorry, all came out.

I wonder how you are coping with all.

I hope both of us get through this.

We have to and I’m sure we will. 😂

[Moon_maiden in reply to Otohime]

It can get to you that you don’t care at times. Don’t get too hard on yourself about that. I’d say you’re doing well, especially if you are still managing work relatively ok. There is some info you could print off about endo and the workplace on the endo uk site. This is more likely to help them understand what you are going through and may help them should they get similar symptoms, that’s assuming they are women 😂It’ll be different for everyone, I’m 52, so diagnosed quite late. This could have made a difference, but early days. The pressure has gone in pelvic area.

Sorry you’re family isn’t helpful, it’s good you’ve some support, it’s a pity so far away though. Do you FaceTime/Skype them?

If you get low do either post or pm. The women on the forum have been really helpful to me.

[Otohime in reply to Moon_maiden]

Thank you mi lady.

Your sound so strong despite of what you are going through 😂

I take some of your strength. 💪🏼🙂💪🏼

Thank you. Xx

I am currently furloughed.

Sorry maybe I didn’t explain properly.

I love working at my workplace.

Mostly we had great teamwork and friendship outside the work..

And I met new and old people everyday at work but it was before lockdown.

Some people just walked in because of they just wanted to talk. 🙂

Surprisingly, my manger trusts in me to do the good job. 😂

I felt useful.

But then especially after worked, I was always had shortness with breathe etc.

So sometimes I sat at the bust stop or on the bench in the park near my home to take a little break before reached home.

I’ll check workplace on endo uk.

I was looking for join 2nd of March but I couldn’t find the click button.

Do you know how to join?

I’m still thinking of join the marathon too in October and if I can’t run, maybe walk but at least my payment for joining in could be useful for others. 😂

I still want to do something good.

My father.

But he’s not a very supportive person..

It’s just no point to speak to him about anything.

Send him emails to say Hi, my father. I hope you are ok?

If he’ll reply with his anything he wants to tell me then I’ll reply him back politely and kindly and carefully but he has no ears to listen to any of mine and that’s it.

Good news, Bad news is doesn’t matter.

If I will, I’ll get a punch in my face and I feel worse.

Yes, thank you for your kind words.

I don’t want to spam a lot with my sad posts to bore everyone 😂😂😂

But it helps sharing.

I’ll follow if it’s ok.

By the way, I’ve been really thinking if I’m facing pre menopause too top on all?

I’m 45 but my friend’s menopause started when she was 43.

Everyone different.

I have different types of symptoms started relates to pre menopause and my self low esteem can be caused by it too?

The doctor at A & E said they thinks it’s endometriosis after he spoke to gynecology department and told me I’m too young for it.

Maybe he didn’t realize how old I am because of often the people thinks I’m my son’s girlfriend. 😂

Even though I tell them how old I am, they seems to forget or they don’t believe me.

My pain is mild right now and the bleeding has stopped...

[Moon_maiden in reply to Otohime]

Completely understand about work 🙂 I was furloughed and then redundant end of October. Even more cross because gynae didn’t follow guidelines as I should be able to work full time by now. Definitely take that one from A&E, seeing as teenage girls get it you must look amazing 😀

When I saw gynae he was surprised to diagnose endo because it’s more unusual past 50, he was luckily open minded.

I was still having periods.

Your father is likely a generation that find it much harder to discuss personal things. He will care, but wouldn’t know what to say, doesn’t help you though when support is needed.

You don’t have to join endo uk the info is freely available. I did join, but I think I had to search the site to find it. You can message admin from here and they’ll send you a link. It’s £15 or thereabouts. There is phone helpline as well.

I’m beat after walking neighbours dog, I wouldn’t get far in a marathon. I did try a horseback marathon once, good fun but the horse I was on pulled like a steam

Train and got too tired around 15/17 mile mark.

[Otohime in reply to Moon_maiden]

Hi 🙋🏻 Thank you for your reply.

After I saw webinar from Edinburg university on your account, I decided to join in!

Sounds good.

Reply you back after watch the webinar. 🙂

[Moon_maiden in reply to Otohime]

What did you think? They are doing some great research. I’ve read a lot of what they went through. Hopefully their results will be amazing. I asked gynae about trying the drug but he wouldn’t off licence.

[Otohime in reply to Moon_maiden]

Good evening mi lady.Thanks for your comment here again 🙂

How are you feeling this evening?

I hope you are feeling ok. ✨✨✨

To reply to your previous comment, I’m sorry to hear that you were made redundant last year.

I saw many colleagues left my work place last year...very hard and sad time.

Covid is making a lot of us to stop or postpone many things that we used to do in life...

But I hope you are coping ok financially and now you have more times for your body to recover. 🙏🏼🙏🏼🙏🏼

I actually can not work full time any more since summer in 2018 😞

I don’t know if I can ever be..

Noooo, I want myself to look like my age, like Mum and mature!

And you don’t want to be asked to show your ID to buy a drink at the shop or the pub.

I always dreamt of being a big mamma.

A man who walked in was struggling with his 7 years old son and so I helped him to focus what he needed to do.

Before he left, he thank me so I told him that I’m a mother myself.

He looked at me really disgusted and said, You Don’t Look Old Enough To Be A Mother.

I thanked him for that 😀

I’m glad that you had gynecologist who has more knowledge or understanding than others. 🙂

It really means a lot to everyone of us.

But I didn’t know that it’s unusual to have endometriosis in 50’s!

Well in the Bible, an old couple Sarah and Abraham had a baby!

Also even young women who suffers from endometriosis did have a baby!

So sometimes and something is possible. 🙂

And I look like I’m not old enough to be a mother, but I’m actually a mother and I have two! 😂

Tarahhh

Yes true, you are right about my father.

But my friends have a very good relationship with their dads...and they are in Japan.

So maybe my father is impossible! 😂

Awee, what kind of dogs?

We have a cat. 🙂

I love horses.

Wow!

Horseback marathon sounds great!

Depends on where you are riding?

I only did ride the horse in my life was many years ago.

It was a first time and so they gave me a very old but a lovely veteran horse called Francis.

I still remember that horse, I love that horse.

Probably dead by now.

From the barn to the seashore.

Then got on the very young rough horse that threw even veteran horse riders.

I was like, I wanna try that.

I was ok though.

I’m scared to ride the horse but love riding the horses.

They are so clever.

lol I understand.

But you lucky you had that experience!

Now you can just put that aside! 😂

One day I really would love to ride again. 🙂

I really enjoyed watch their talks!

Amazing stuffs!

So educating!

So good for my brain! 😆

So inspiring that the people like them wants to study, investigate to find what they can do to help!

And both professors are great!

More of, one of them is a male professor who is part of it is so encouraging for women to know that there’s male figures out there wants to understand us!

Still many things aren’t clear.

A lot of things to think of.

Not enough information yet.

It’s frustrating at the same time.

I understand that it is so important for us to share.

More we speak, more informations they gets to over come this struggles.

It’s really, any women’s struggle even for men really.

What do you mean by drugs? 👀

If I won’t hear rom you, because of it’s 10pm and kinda late.

I hope you have a easy evening xx

[Moon_maiden in reply to Otohime]

MorningHow are you feeling today? Apologies I didn’t reply yesterday, slightly rough evening after eating.

The company closed, it had been on the cards regardless of covid.

Completely understand about not working full time, I was struggling when at work and spent a fair amount of time on the sofa 🤦‍♀️😆

In my family age isn’t always apparent, but nothing like your experiences, still think it’s good, but not so when you aren’t taken seriously. I probably look 80, definitely feel like it 😆

I used to work with and race Arab horses, enormous fun, but a very long time ago, haven’t ridden in years.

It’s a neighbours dog I walk, I prefer cats, the last one had for around fifteen years, but she got ill last year.

The professors are doing some great things. They are testing a drug originally created for cancer. There didn’t appear to be many side effects. It’s not licensed for endo, as long as the patient is aware and agrees it can be prescribed. Neither GP or original consultant would.

[Otohime in reply to Moon_maiden]

Good morning!Thanks for your reply 🙂

I hope you are feeling a bit better? 🌹

It was quite sunny this morning but now cloudy.

Third times lockdown and so hard to survive...

I’m trying to think that I’ve got a lot of times to do things that was hard to do but getting a bit repetitive here 😂

I don’t believe you look 80’s.

But if you do, you are lucky to look like a beautiful mature woman with intelligence!

That’s what I want to be!

For me, a younger looking woman with an old body 😂 I always say that

And I feel it’s no use! 😂

Sorry guys to disappoint you kinda feelings 😂

But please blame my parents and not my fault.

Oh wow!

So you used to be a horse racer?!

Sorry if I’m not understanding...

I’m thick in a head..

Do you miss been around the horses? 👀

I hop oneday you’ll be able to ride the horse again 🙂

Oh!

Sorry to hear the loss..

But fifteen years are a long time compares to ours...

That’s lucky if you had yours from when she was a kitten?

My children wanted a dog or a cat and I understood that.

But we talked about having them isn’t just awee cute cat, much more than that and costs a lot of money that I didn’t think I could afford means we couldn’t offered them a good quality of life.

Who take a dog for a walk if we aren’t at home or maybe too tired or we can’t go on holiday etc.

So we got a hamster instead and she lived for four years lol

Then our cat came from our balcony, he found my oldest son at first then I and my youngest son found him later.

Obviously my children were so happy and excited but I again talked to them and said that he could be someone else’s cat and they would be very sad if we kidnap him, so we waited for about two weeks to see if he would stay and he did.

We took him to vet and checked but they said he had no chip and cats usually look for their best owner so we should have it lol

Bad vet.

We waited for one more week to see if anybody claims as their cat but no.

So now he’s our cat but he’s now 9 years old and ill.

He’s such a good cat and surviving but we were told we need to start thinking of put him down.

Sad but we still believe in him and we are making more memories before it’ll have to be done.

So here we are, ill me and ill cat.

Sorry you were talking about the drugs that the professor was talking about?

I might have missed that out or I mixed up a lot of other things they said.

Is that when she mentioned 30 women trying to see how it works, something like that? sorry.

I took some screenshots off some informations that caught my attention to look at afterwards.

I’ve been reading a lot of things off the internet to understand what exactly endometriosis is and it’s been like some science studies.

I went to bed around 4am last night too because of did some discussion with my oldest son started with him saying the universe is expanding Mum, do you know?! lol

But I had pain anyway and the webinar completely blew my mind, I didn’t think I could sleep.

I did have a mild pain to start with today but did little sit ups and stretch to help my muscles and to reduce pain.

My youngest son sat on my feet for me to do the sit ups lol

I used to have a bed with bead head that could hold my feet for me to do the sit ups by myself but I don’t have that any more so..

I told him I want to do this anytime I can and when I want to do, so help me?

I feel so unfit and worry that causes more problems as mostly at home.

It’s not a lot of I’m doing but I know little by little it helps.

And we were talking a lot about things related to endometriosis and other things while doing it.

Now my boys knows about endometriosis which is very important to them too.

I haven’t had anything to eat yet, only lots of water.

I feel bloated.

Don’t feel to eat.

Sun is up again!

I hope you are feeling better mi lady. 🙂

Let’s hope today will be a better day. Xxx

PS If it’s too much for you to read and reply to my message because of you don’t feel like it or you are in pain, it’s ok 👍🏼

My message is toooo long and a lot of typing I did for anyone to anyway 😂

But most important thing is that you are ok ❤️🙂❤️

[Moon_maiden in reply to Otohime]

I’m up and down still, currently laying down 😂 plucking up enthusiasm to take neighbours dog for a walk.Our cat was a rescue, they reckoned about a year old, she had a good innings.

Sorry to hear about your cat, it’s a very tough decision, I stayed when they did it.

I take a strong multi Vit/min so hopefully replacing some with lack of food. Plus extra others like Vit D. Are you taking anything to make up for not eating?

If you google Edinburgh endo research there are some articles which includes the name of the drug. I would have participated like a shot, but it’s only women around their area.

I miss riding sometimes, it would be nice to go out once in a while.

There is a really good site for research articles, something like research.net and you can search for conditions.

🤞 today is better, one step at a time 😀

[Otohime in reply to Moon_maiden]

Hi.Thank you for your reply 🙂

I hope my long long message did not exhaust you? 👀

But I’m enjoying chatting with you though

Haha

I’m glad that you are having a better day! 😆

It’s so good to have a little break. 🙂

Awee so you gave her a happy life before she went 🙂

Lovely 👍🏼❤️👍🏼

Well done 🙂

Thank you.

I think the previous owner might have kicked him out because of he was ill..

Vet didn’t notice it and told us he was very healthy.

But he had little blood in his stools and we did a lot research etc to find what was best for him with his diet etc to help him recovered. 🥲

At first he was a bit violent and scared cat, but he got used to us.

Such a short period of time that we had but we hope he did have some of happiness and love in his life.

So we are sad but glad that he came to us. 🙂

I don’t eat or take anything when I’m like this.

I mean I take iron supplement, hemagenics?

She left but used to work with her is a nutritionist and she recommended to me after saw my blood tests results.

My red blood cells counts was very low.

It worked well but I had to wait for about three months for that miracle to happen.

My body needed a lot to sink in.

It makes sense with endometriosis.

But I don’t take it all the times now, I only take one or two a day when I feel I need it.

Pain is reduced a lot after done a little very little exercises.

I managed to have oats with berries 🙂

I often wait till my stomach feels hungry.

If I’m not hungry because of what ever reason then I leave it. lol

Usually shove some salads with a lot of green like a lot of spinach and tomatoes 🍅 with black olives and mozzarella cheese into my stomach.

If I want extra, add smoked Mackerel or boiled eggs or cheese

It’s so good and makes me feel good.

I love salad.

And I don’t get constipated, me going to loo is good.

If I don’t go to the loo us really bad sign.

It does increase the pain doesn’t it? 👀

Horrible horrible enemy! 😡

I’ll check their website!

Thank you ✨😊✨

Ahh, I know that feeling.

Yesterday I told my boys that we’ll go for food shopping today.

Today I’m not sure and it’s already 4pm 😂

It is good to walk out even just to do the food shopping.

Walk dogs ☺️

Maybe more like your neighbors dog is taking you for a walk? 😁😁😁

Hehe, you said you can do without sarcasm.

If I are there, I walk with you and we can talk a lot lol 😂

What else and ride the horses 😊

Let’s hope then ❤️

I am more interested in what is endometriosis made of?

What exactly it is?

I thought if we know what it is and what’s the causes then we can find the solution to this, trigger, maybe control, implant some parts of body to another to balance, prevent, how to cure, diet, exercise etc...and lots of scientific words languages 😂😂😂

Gosh

But that was how I started.

Interesting.

lol true!

One step at the time!

And we have ups and downs, at lest we have break from down when it’s up is great! 🌹🌹🌹

I hope maybe you managed to walk the neighbors dog x🙂x

[Moon_maiden in reply to Otohime]

I like to think she had a good life. Used to curl up next to me going to bed, would never scratch or bite. Other cats a different story 🤣She was dumped at a rescue place as she got a leg through her collar. I don’t do collars on cats.You gave him a good life at that point, they know who will help.

Are your bloods back to normal? If you have another test ask to include Vit D and hormones.

My abdomen and stomach rarely feels hungry, taste buds do, especially salt at times. Pringles salt and vinegar, been known to take the flavouring and dump the crisp 😂

Your diet isn’t bad though, it’s the fact we are eating to survive rather than really enjoying it.

It does cause extra pain when you can’t go, have to take Laxido every day, thought I’d be able to drop it after op.

Even gynae don’t really know what causes it, the general consensus is the womb lining when you have a period escapes to other areas. The cells apparently act in a similar way to cancer cells, but obviously not terminal.

Some have found certain diets does help.

I took the dog for a walk, bit too long, I went a bit further. She’s only tiny, can’t remember breed.

[Otohime in reply to Moon_maiden]

Hi!I’m sorry I was in severe pain started after got back home from a little food shopping after the last message you sent you.

I felt I was getting better.

Last night the painkillers didn’t work.

Right now feel a bit better.

I hope you’ve been ok.

Love my cat curled up next to me.

On the bed sometimes in between my legs to keep himself warm.

I agree, our cat don’t have collar.

At first we thought he was a stray cat and didn’t think it was a good idea to strict his neck.

How did her leg got into her collar on her neck and being dumped 😱

I don’t want that happen to me.

My blood and urine tests has been always fine...

I went to A & E only a week ago and he did all the tests just incase.

Somehow always no shows.

But thinking of contacting the doctor again on Monday.

I had to check the letters from gynecologist yesterday.

More I get to know, more I realize I don’t know.

I found the letter to say I already had hysterectomy because of she found a cyst with ultrasound?

Then I went to have laparoscopy.

That was when they found endometriosis and so on.

But I also need to have smear test every year.

And then saw my gynaecologist last year for colposcopy and she told me about removing my womb.

I’m finding difficult to cope with this.

I think I have selective hearing.

I pick up only some words off the whole sentence.

It’s difficult enough understand everything explained in English.

Top of it is some medical language.

I have problems observing everything.

One day I’m so bright, understand everything.

Another days I don’t at all even I pay full attention.

I’ve been like this for sometimes now.

I wonder if I developed some sort of disability..

I was naughty

I ate half of huge packet of Morrison crisp yesterday 😂

Salted.

I don’t know why I did that.

But felt so hungry for junk food!

No good but it only hurt me and not others 🤣

I know why I did that!

I’m angry and now I’m hungry! 🤣

Want to eat all the foods that pops into my head like fried chicken, beef steak, calamari, nice fishes, sushi and doughnuts but I’m scared to eat because of the pain maybe back 😂

Not that I want those things everyday though.

I think I’ve been doing so well despite of everything 🥲

Give me a break!

Yes.

You know what I’ve been thinking?

The symptoms of endometriosis on the internet needs to change.

We don’t suffer only the times when we have period 😞

We suffer from bleeding and pains even when we are not on period too.

Young women facing miscarriage or can’t have babies they dreams.

Depression and frustration.

Loss of appetite.

Women with period and pregnancy is discriminated in some men’s world/work then how can women with endometriosis get respect from men?

More information needs to be up and understood...

I’m 45 and done most.

But those young women needs help, next generations and generations if this earth is still here for us 😂

That’s an another problem!

PS I hope you enjoyed your walk x

Oh and my supplement includes B6+B12.

Brand called Nutri.

[Moon_maiden in reply to Otohime]

Great you are feeling a bit better at the moment. This is a day at a time consideration 🤦‍♀️I get cravings for salt and end up having a few salt and vinegar Pringles as they tend to be strong, sometimes just take the flavouring and ditch the crisp 🤣 I wouldn’t worry too much. I’m grateful if I ever feel hungry, it’s more a force yourself to eat most of the time.

I think you’ll be managing far more than you realise. I get that you feel you don’t take it in, it’s common especially when with doctors, you never take it all in.

I’m making notes tomorrow in preparation for my lovely chat with the consultant on Monday. He knows I’ve put in a complaint 🤣

The more the condition is known about the easier it will be to handle in the workplace. It needs the acceptance of something like diabetes. Unfortunately to me it falls in the never going to be cured category. 🤞 not the case for much longer.

[Otohime in reply to Moon_maiden]

Hi ya. 🙂Good to hear from you.

Thanks for your reply.

Sharing is caring.

We’ve been chatting a lot maybe not so much of medical sides by using medical language and stuffs, but those experiences and feeling are real.

Its come with a package. 🙂

So thank you for being you. 🌹🌹🌹

It helps me reduce my anxiety that helps me to cope with my physical problems too.

lol I just imagine what you were doing with that packet of crisp!

But I don’t know you.

I must confess, I also drunk a half of tango orange today 😀

My appetite is back and I want to eat meat 🥩 but I’m scared but ended up drunk tango orange 🍊😃🍸

So far no pain surprisingly

True, we are all warriors ⚔️

We didn’t think we gonna have this problem.

Not that we ever wanted this diseases 😡

Despite of all, we are doing well. 💪🏼💪🏼

And if anybody don’t think so then that’s their problems not ours.

Wow!

You made complaints?! lol

I’m laughing because of you are superb!

You are so calm and so focus on what to say to me so you must been really crossed.

I admire your courage and you are so strong!

I’m scared to make a complaint, I’m chicken. 😖

I take a lot of courage to ask one little thing usually.

That’s why end up doing things myself but not always good as we all nee helps sometimes now again!

Especially something like our health.

What did you complain about? 👀

Maybe I can do the same if my action helps others ✨✨✨

I don’t want this to be wasted 🙂

I would say men with small penis and impotence.

But there are some ways to help them over come that struggles and it’s not disease..

But women with period and endometriosis isn’t curable 🥲

Need more understanding towards women 🙏🏼