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Endometriosis UK
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Had my lap

Had my lap today with a private endo specialist and he’s finally found some endo and removed this and also have Adenomyosis as my uterus is soft does anyone else have this?

Finally after years of pain and symptoms I’ve got the answers I wanted after my first lap in 2015 was clear under general gyne and recently all my scans ultrasound and mri have been clear I still have endo and adeno just shows ladies that there is hope xx

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I’m having my first laparoscopy on 23rd with a private endo consultant.

It’s really positive that you’ve got answers you deserve after 4 years! Wishing you a speedy recovery and all the best! It definitely shows that there is Hope! Xx

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Hi! Glad that you've got answers and hope your recovery will go smoothly.

Speedy recovery and yes there is always hope!

Best wishes xxx

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Thank you so much I’m hoping I will feel better in a few days ☺️ Very sore at this moment in time.

Yes just wanted to share my experience as it can give others hope that even if scans are clear then there can still be something there xxx

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I hope that for you!

Actually my MRI was clear and it drove me crazy! Your experience and other ladies' really gives me hope.

Still waiting to have my diagnostic laparoscopy.

Lots of love xx 💛

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Yes it did me too well he said there was minimal showing but turns out when they look in there are issues ☺️ And yes I’m glad it does I was sure this morning they would find nothing.

Let me know how you get on fingers crossed for you 💜 xxx

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Thank you so much xxx❤

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That's great news for you I'm considering going private, how did you find your specialist? I'm not sure how to start looking.

If you read my previous posts you'll get a picture of what a nightmare I have been having so far this year.

Any advise would be greatly received

Wishing you a speedy recovery

Ria xxx

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Hi thanks for the comment and it’s great to finally have a diagnosis as they say but it’s taken me years to get it.

I rang my insurance company and asked them who they support at this hospital as I looked at the hospitals and endo specialists in my area online.

Think the best place to start is looking or calling the private hospital and they can tell you names etc to look yourself.

Sounds likes you’ve been through it also just hope you get the answers you need as it shouldn’t have to be this hard to know what’s going off... I had a lap done on nhs years ago under general gyne and nothing was seen my specialist said it could of been missed as you don’t just start to have a softened uterus and all the symptoms matches both endo and adeno.

Any questions ask away can I ask where you are? Xxx

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I've has 2 laparoscopies since 2007, they found a endo mass on my bowel back in 2007 but didn't do anything because it was on my bowel and they weren't sure how much it was effecting my bowel. I remember a consultant saying to me, what 27 year old wants a stoma bag to deal with for a while.

I live on th Hampshire/Surrey boarder. If I go private it will be self funded as don't have insurance. I'm just at the end of my teather and can't take anymore of this. It's ruining my relationship, my children shouldn't have to see me in so much pain, but they have and it has effected them, especially my daughter, she's only 7.

Hearing you story gives me a bit of hope, being treated by nhs twice before and still having these issues, it like if you pay, the service you get it better.

Thanks for your advise

Ria xx

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I’m so sorry to hear what your going through it’s not nice at all and it effects your life and I kept thinking it can’t be in my head about this.

Yes it’s the cost that can be a problem have you looked into insurance I’m with Bupa and they are great might be something to look into but I know it’s a personal choice, I’ve also read that even if you find a endo/adeno soeacalist and just have a consultation if they work for nhs they can refer you back through them to see them for treatment under nhs?? Could be another option for you.

I’m glad it gives you hope as I was starting to give up a bit with things as it effects me most days let me know how you do on and take care xxx

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Just to let you know (if you didn't already), Frimley Health have recently been awarded bsge accreditation and are now an endo specialist centre, with a full MDT approach to treatment, so you won't just get the opportunity to see an endo specialist, there's also a specialist pain consultant on the team, along with several other specialist doctors/nurses. If you can, I'd see about getting a referral there for treatment, it may not be quicker, but you're treatment will be better than with general gynae.

Xxx

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Thank you for posting this. I had a lap in October where nothing was found. I was only under for about 60-90 minutes and no one spoke to me after, just got handed a letter saying I was discharged from the service.

I’m currently waiting for an appointment for a second opinion on the nhs with an excision specialist. Fingers crossed I’ll get some answers eventually.

Best of luck with your recovery xx

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No problem sorry to hear you didn’t have any joy first time round like me I know the feeling and it’s not nice, but yes you really have to push for it these days mine was quite deep so he doesn’t think general gyne looked enough best of luck and let me know how you go on.

Xx

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I have adenomyosis not sure about endo yet tho same symptoms next time I'm at dr's I'm asking him for CA-125 blood test glad you have your diagnosis at last xx

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How do you manage with it if you don’t mind me asking? I’ve read up about it but there’s not a lot of information really.

Yes push for what you can have you seen a gyne dr then about endo?

And yes I’m so happy finally somethings been done xx

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With adeno having all the same symptoms as endometriosis I thought they would have been doing me a lap or a blood test but nothing yet I think it's because the found adeno, and have stopped looking, I'm seeing gynecologist in May so I'm asking them to look into endo, I got diagnosed nearly 4 yrs ago it's horrible I have the pain everyday and on strong painkillers at the moment, I'm currently asking for a hysterectomy it's the only cure for adenomyosis do you have children xx

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Sorry to hear you’ve been suffering with it I think we all do in one way or another and yes my consultant said to me because I’ve got both now he’s removed the endo I’ve got to wait and see what happens as on depo injection and don’t have periods at the moment but I’m 26 no kids and don’t really want to not have that option so young so will see I’ve heard it’s not nice I get pain every day from mild to horrendous and hospital admissions now and then because I can’t manage at home with the pain.

Hopefully you get sorted then and listened to because when I went through nhs my first lap was clear they say but I don’t think they looked deep enough as that’s what my private consultant said and got told in 2015 I had heavy irregular periods and basically live with it 😡 well it didn’t stop me pushing years later but unfortunately it would have taken 8-12 months for me to wait on nhs and just couldn’t do it xx

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That is a long time to wait on NHS I was thinking if i had the hysterectomy they would find it at the same time xx

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Very long time compared to 3 weeks going private because he went on holiday in between 😂 yes let’s hope is that what your wanting then? Xxx

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Yeah that's what my appointment is for to decide if I can have one I've had one gyne say I can have one but I've got to get the approval of another now which is just bazar, I'm asking for the blood test to make sure I don't have endo with it 🤞 I don't xx

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Well fingers crossed they will do one then ☺️ If it’s best for you xxx

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Thanks me too, I hope you heal fast also xx 😀

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Hopefully very sore today so pj day it is 😂 walking around alright though it’s sleeping and sitting xx

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We can't win sometimes can we 😂😂 I'm sat in my PJ's at min on sofa painkillered up, I had a good day yesterday that good I painted my landing 😂 so I'm paying for it today xx

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No we can’t and sounds good I’m the same today tramadol is my best friend today 🙈 aww get some rest but like you say when we have good days we make the most of them xx

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Haha same I have tramadol and zapain both my mates too one for ok days one for bad days periods are the worsed nothing works so I try tens machine, tiger balm and painkillers can't wait until the day I stop rattling and can get back to living and go out, and get back to work xx

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Well let’s hope we have more good days than bad ☺️ I know I’ve been off for a month going back 25th of this month and can’t wait just effects things so much like going out with friends and family feel like I’m housebound at times xx

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I know walking around Asda is a task for me some days xx

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I’m the same it’s comforting to know it’s not just me who goes around like this some days xx

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Hi, so pleased for you. I've got my op on Monday so fingers crossed xx

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Thank you means a lot hope it goes well for you please let me know 🤞🤞 xx

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I have adenomyosis and not endometriosis like the doctors thought, they say the symptoms are so similar. Glad you have answers now. I went private and what a massive difference! It should be like that on the NHS too x

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How do you manage with it if you don’t mind me asking? Yes they are so similar the symptoms and I’m glad I now know what’s going on. Just shows the difference going private makes xx

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Hi there are some days when I don’t cope either with bleeding very heavy through my clothes or pain or feeling so tired with it. I take each day at a time and see how it goes x

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Thanks for letting me know I’ll have to see how I go with it because I have both xx

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Yes I have it. It adds to the symtoms. Bless you. It's good you had some endometriosis removed. You may get some relief now for a while. I hope you feel better and not in too much pain. Take care. X

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Thank you and yes it does double whammy as they say yes so glad they removed the endo ☺️ Let’s hope I get some relief like you say in a bit of pain today worse than after the op but it will get easier xx

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Yes it will get easier. It's an awful illness to live with. I can't have a hysterectomy even though I need one. I have been told it's too dangerous. I just had my April appointment cancelled no new appointment sent to me. It's a fustrating condition that can feel very lonely. So an relief from it is welcomed. You rest and take it easy. Get better. Xx

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Thanks for your reply yes my consultant said to me the only cure is hysterectomy but I’m too young to have that and I don’t want it yet as might want children as I’m 26 and don’t have a partner yet but will see.

Oh no sorry to hear you can’t have one have you see someone else about it?

I’m resting with a hot water bottle and strong pain relief in a lot of pain at the moment but thinking it’s worth it as I now know what’s going off. Xx

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Ah bless yes your hot water is the best. Sometimes you can feel like they are permanently attached. I have 2 children so very lucky that mine didn't get as bad in till I had them. They are my world. But yes 2 consultant have said they wouldn't give me a hysterectomy it's too dangerous. I do wonder about going private. I think you will have some relief now for a while. Sorry you are in so much pain tonight. Hopefully if you have a good night sleep you will have a better day tomorrow. Best of luck. I think you can be offered to have your egg frozen while you are young if you think children is what you want in the future and if the endometriosis and adenomyosis is going to be a problem for you with trying for a child in the future. Take care. Xx

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Yes maybe something to look into going private ☺️ I’ve actually wasted years going through the nhs.. and thanks I hope it goes soon I don’t know if it’s sore in general or from op as well.

Yes it’s something to discuss with my consultant when I see him as he said wait and see what happens as tricky one the endo can come back too xx

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