Diagnosed about 25 years ago and not doing good

[loobyloo69]

Hi lady's, I haven't posted anything for about 2 years 😪

Well I'm actually not in a good place just now I've been fighting it for years but from the start of the year it's been a lot lot worse

I truly thought when the periods stopped ( just been having a few a year over the past few years ) I'd be getting my life back but we've now descovered that the damage the endo has done will always be with me 😪

For the last 25/27 years I've had a terrible time it's just got gradually worse

It has actually robbed my life I wasn't able to have kids, a huge impact on my life. Haven't been able to work for the past 18/20 years because I was off so much I had to end up leaving and been on invalidity from then

The easiest way for me to explain it is here we go 🤔

Having normal period pain is there constantly it never goes away and that's on good days

It varies from day to day I can't make any plans because I don't know how I'm going to be

On not to good days when the pain is worse I find it hard to get down stairs and do normal life household stuff

On bad days I can't get down at all and have to actually crawl from bed to toilet that's if I can actually manage it

I haven't had periods properly for the last few years about 4

But the symptoms are always there they never go away I can't go outside by myself because I can't walk properly. My mum bought me a mobility scooter last week so I can get out. I've been on it a few times and it's amazing. Everyone I've spoken to and haven't seen for a long long time says your quite right it's allowing you to get out the house. So that's where I'm at at the moment. Hope yous are feeling a bit better today Love n hope for a good day Linda xxHi lady's, I haven't posted anything for about 2 years 😪

Well I'm actually not in a good place just now I've been fighting it for years but from the start of the year it's been a lot lot worse

I truly thought when the periods stopped ( just been having a few a year over the past few years ) I'd be getting my life back but we've now descovered that the damage the endo has done will always be with me 😪

For the last 25/27 years I've had a terrible time it's just got gradually worse

It has actually robbed my life I wasn't able to have kids, a huge impact on my life. Haven't been able to work for the past 18/20 years because I was off so much I had to end up leaving and been on invalidity from then

The easiest way for me to explain it is here we go 🤔

Having normal period pain is there constantly it never goes away and that's on good days

It varies from day to day I can't make any plans because I don't know how I'm going to be

On not to good days when the pain is worse I find it hard to get down stairs and do normal life household stuff

On bad days I can't get down at all and have to actually crawl from bed to toilet that's if I can actually manage it

I haven't had periods properly for the last few years about 4

But the symptoms are always there they never go away I can't go outside by myself because I can't walk properly. My mum bought me a mobility scooter last week so I can get out. I've been on it a few times and it's amazing. Everyone I've spoken to and haven't seen for a long long time says your quite right it's allowing you to get out the house. So that's where I'm at at the moment. Hope yous are feeling a bit better today Love n hope for a good day Linda xx

[Rozalia69]

I can feel you sis, I’m just 2 weeks after my 3rd laparoscopy. I do have bad days and good days, when I’m on my period is no way I’m get up it’s so much pain:(.

[loobyloo69 in reply to Rozalia69]

Hi Rozalia thankyou for reply 😌 I’ve lost count of how many lap I’ve had over the years hope your doing ok. Periods and bed oh dear I couldn’t even stand up let alone anything else still get that maby 2/3 days every week in literally one day at a time, have been for a lot of years ha

So sorry for your suffering hope your having as good a day as possible x Linda x

[Abbbb]

Hi loobyloo69,

Gosh this sounds horrific. Absolutely horrific! I cant believe you are being left to suffer like this its horrendous.

How many surgeries have you had for your endo and when was the last one?

Please dont give up, I know how exhausting it is, but the disease has to be removed from your body even if it means removal if parts of the organs otherwise theres only down and no up!!!!

Is there any reason why they cabt do another laparoscopy to remove what ever is there? Even if they cant get all of it, reducing what is in there will reduce how hard your body is working and hopefully give more relief in between flare ups. No periods isnt necessarily a good thing, only a reduction in estrogen will give prevent new cells being created but that wont stop the pain of the cells that are still there.

I really hope theres something that can be done still, you've lost so much of your life to this disease. It's just not fair.

Xxxxz

[loobyloo69 in reply to Abbbb]

Hi Abbbb, thankyou for the reply

The last lap I had was about 5yrs

About 12/13 yrs ago it was discovered everything was all stuck together womb etc and bowel n bladder. Had a very big surgery with gyno bladder bowel surgeons trying to separate as much as poss ( but still a lot left ) without damaging further as in bladder bowel bags. They said I was very lucky I didn’t have bags permanently. I was only about 37/38 at the time

Was also told repeatedly over the years it was a waste of time getting a Hysterectomy as it wouldn’t help because of the damage it had already caused scar tissue nerve damage etc and it was to dangerous to have any more surgery

I’ve been down every route imaginable over the years

I’m just now getting my head around the fact that I’m going to always be like this unless there is an operation that can remove my complete middle section and put a new one in haha sorry I just need to laugh. I’ve just been like this for so long it’s nearly half my life

At the moment I’m waiting on an Occupational Health coming to see if they can make my house more adaptable for me they were talking about stairlifts etc

2 weeks ago my mum got me a mobility scooter and oh my what a difference it makes for me and I’ve only managed to get out on it a few times lol. But know what I don’t care what anyone says about me having one ( I mean where I stay ) because it’s giving me a wee chance of getting out off the house myself and the people that actually do know me are saying good for me I should have done it years ago lol

My hubby has been an unpaid carer for years and do most of housework cooking and all that aswell

Sorry for going on

Anyway how are you doing hope your having as good a day as possible Love Linda x

[Abbbb in reply to loobyloo69]

I'm absolutely devastated to hear the damage it has done to you. I'm so sorry.

This is exactly the reason I has a full hysterecomty 10 weeks ago, and I'm 33. I wasnt able to use hormonal suppressants anymore dur to various reasons and zoladex injections decimated my bone density so I was at risk from osteoporosis. So with three children I decided I couldn't live in pain and paying for all my care privately I couldnt have laparoscopys every 3months which is how quick the endo would come back.

I'm finding the menopause ok. Its hard working and with the children I haven't had much adjusting time but most importantly I am pain free..fingers crossed. I cant have much in the way of HRT as estrogen would just feed any endo that's left but luckily the symptoms aren't too bad. It's the brain fog that's killing me!!! Lol.

If theres any chance of getting a second d opinion please do, I know you've been through so much but I've heard in the US they actually sear nerve endings in the pelvis to stop the chronic pain. It doesn't help what's in there but if just gives you some relief....I dont know.

I hope the occupational health person can make your life a little easier.sending all the positive vibes I have to you xxxx

[loobyloo69 in reply to Abbbb]

Hi Abbbb

Thankyou for the reply x

I sincerely hope having a hysterectomy has helped you and continues to in the future 🤗 I’ve got everything crossed for you x

Before I had the separation surgery I was put on zoladex injections for about a year and a half to try and stop the periods etc so they could see what it was like in there without having periods. But because I was on the injections every month for as long I was put on HRT because of the threat to osteoporosis etc. It was horrible getting those jabs made them put numbing cream on before it was done haha. Anyway it did the job it was needed for

I’ve spoken to everyone under the sun and because of the damage it’s done over the years it’s to dangerous for any more surgery

I stay in Scotland so I’m unable to have any of the treatment available in the US 😥

I honestly think if it was nowadays not 25 yrs ago I would have had a lot more options available to me. But it’s no use dwelling on it or the past because there’s nothing I can do about it now

I’ve had my wee scooter a couple of weeks now and I’ve managed out on it about 5 times lol. So that’s 5 times I’ve been able to go out when before I’d not have been able to do 🤩 and by myself aswell haha

Hope your have a good day x love Linda xx