Endometriosis UK
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Lap op tomorrow

Hello lovely ladies... I am a new member, my name is Laura and i have a daughter with a lot of gynea problems. I was hoping for a little advice as we have been given a cancellation and her lap is tomorrow !!!!😳 I shall explain a little about her. She is 17 and started her periods at 15. Immediately she had severe pain and very heavy bleeding. January this year, she started to get extreme left sided pain on exercise or walking too far, this ended up making her faint and in a&e. She suffers from severe fatigue and now she has problems with her bowels. We have been under a general gynaecologist and she had 5 internal ultrasounds which have showed her left ovary is completely stuck behind and to her uterus and her uterus is tilted. So the consultant is suspecting endometriosis and is performing a lap tomorrow. I really am looking for any advice. I thought maybe she was too young for endo, even though she has all symptoms. Is there anything i need to be aware before she signs her op consent. As she is 17 they treat her as an adult and do not talk to me. Also her gynae consultant is not a bsge specialist. So sorry for babbling on, but i just wanted some advice as she is only 17 and i want to feel well informed ready for tomorrow. Thank you all so much for taking the time to read my rather long post xxxx

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Hello, I think once you start getting periods you are not safe from endo. I'm only 20 and cant remember when my symptoms started but I've had some of them for a good few years. This is the first time I've heard someone getting the pain on their side like me mines not as severe but it does make you feel weak around the same time as I developed the pain in the side and I developed asthma I also developed ibs which caused me to lose 2 stone in weight which made me even weaker I think. Anyway I recentlly signed the constent op form they basically said they will make a small cut above the belly button and bellow the button and put a camera in to look around if they find anything they will burn it off also while they are in there if they cause any damage they will have to cut me open to fix it. That was basically it my doctor also offered to fit the coil in for me. I think the best thing is for you to be there and be supportive. Also hot water bottle and peppermint tea is meant to good for after if she has pain.

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Thank you so much for replying. Did you have the coil fitted? I have read a lot of mix reactions to this!! They said that her left pain is from where the ovary is stuck to her uterus, so when she moves her pelvis ie: exercise or brisk walking it is causing painfrom restriction as it is no longer floating !! It does make sense i suppose. Did they find this the reason for your left sided pain ?I shall stock up on peppermint tea xx

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I havent had my op yet or coil fitted hopefully I will though in a couple of weeks 🤞🏻 I've heard a mix reaction about the coil but I'm going to try it because for some it causes pain for a few months but then frees them for pain for years after. I'm not sure about the left pain but endo causes a lot of different things its shocking. Hopefully they find something so you know what it is because not knowing is the worst 🤞🏻 Also there maybe herbal remedies and diets to help if you find out its endo as well as hormonal treatment.

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Thanks so much for your reply. I will stay open minded about the coil if they offer it. I think she will give anything a try if it possibly could relieve some pain!! I hope your op goes well xx

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Set up a duvet downstairs for her, i had a lap earlier this week and you need to keep moving to get rid of the gas but you don't want to keep climbing upstairs to get some sleep, so set up a duvet and let her nap downstairs, also peppermint and just be supportive and be there, I really needed my mum for a post-op cry and for support and I also needed her to help get me dressed etc, and she will have just had her insides pulled about and she will feel bruised! Also make sure she keeps on top of her pain relief, take every 4-6 hours on the hour because she will be sore! Good luck to your daughter though! X

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Thank you so much for replying. Hope your op went well. Was yours for diagnosis or treatment? I know she was hoping to go to a university open day on Saturday, but your reply has helped me explain to her that she may well need to take it easy. I shall make sure i get some peppermint tea , pain killers and give her lots of TLC xx

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For diagnosis and unfortunately they didn't find anything and have told me to come back in a few years, I'm frustrated to say the least!! I'm 18 almost 19 so can relate the whole wanting to go out thing and keep things as normal as possible, I thought I could go to a Halloween party this Friday, but that's just not happening!! Just remind her that she might have small incisions but her insides have been poked, pulled and prodded! I honestly hope it goes well for her and she gets a diagnosis but she'll heal fine because she clearly has a super mum at home!! Xx

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Hi

I had my lap 10 weeks ago and like ur daughter not by a bsge surgeon but most gynae surgeons can recognise it they just may not b able to deal with it like a bsge surgeon as it mayb on a bowel or bladder blah blah but it most important that they just diagnose it... then there go from there.

I had same prob, always left hand pain, for 20 years and when i had me ultrasound internal they found my left ovary was hidden so couldnt see it, i also had tilted pelvis.

Therefore needed a lap.

On having lap i had nothing at all i was totally healthy but i had very thick blood so was recommened i go on tranexamic acid which thins blood!

Also a naproxen which helps inflammation.

It has helped me alot. Im not passing clots now which was my problem. Due to thickness.

I dont know if there is age with endo unfortunately, ive had pain since i was 18-19.

Only time didnt was when i was on yasmin.

When she has her lap make sure u have peppermint oil or tea for her to drink coz she will get indigestion the air when give u lap bloats u and it prob more painful then lap.

It wasnt painful, just uncomfortable, she will bleed, so make sure she has sanitary towels. A nightie as she wont want elastic round waist.

Things for her to read or watch or do.... boxsets anything to keep her mind of things.

She wont b able to shower for about 3 days as the dressing.

My stitches took 7 weeks to desolve So dont stress if hers dont.

Also painkillers and hot water bottle... never let her get uncomfortable give her paracetaol every 4 hours 4* a day so she is comfy

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I was diagnosed in 1989 at the age of 19 and was told that I had probably had it all my life and I started my peroids at the age of 10.

Its important just to take things one step at a time. All the Endo ladies have given brilliant advice post-op. Let's wait to see what they see or don't see and we can take it from there. Endo is a very individual disease and affects each and every person individually.

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Thank you ladies for all the great post op advice. I shall let you all know the outcome of the lap tomorrow night xx

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Plenty of rest and painkillers regularly will really help your daughter it is hard to move around the first few days but it is important to walk around every now and again to get rid of any gas, baths really helped me too my stitches didn’t dissolve and I ended up having them taken out at the doctors in the end. I have the coil and it can take a while for things to settle but everyone is different. I hope all goes well tomorrow for your daughter Xx

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I’m 27, just had a lap on Tuesday, recovery is steady

Just be gentle with her, I found the day after the surgery to be worse than the day of surgery as the pain medication they give you were off. I’m 3 days in and in less pain but still tender and bleeding a little

Peppermint tea will help with the gas pain in the shoulders and stomach I’ve not had as much gas pain as expected maybe as I’m drinking so much peppermint tea

I’m sticking to a bland diet for now I’ve had toast, grapes, soup, bread and butter just whilst my stomach settles

Still feeling groggy but less so, she will feel stronger every day I’m spending a lot of time in bed then on the sofa downstairs so I can do a bit of a waddle walk

She will be ok I’m 27 still a mummies girl and they treated my mum really well at the hospital she went to get a coffee and stuff whilst I went in to have it done and she was back in my room waiting for me. Staff I found super understanding

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Hi I would say not to overdo it and stay in bed other than standing regaularly and mooching. At my pre op I was told I should be ok in about a week,so day five I walked down the road with my dogs - I was then laid flat for the next few days! In the end I was off work for four weeks as the recovery took time physically and the brain fog from the op also took quite some time to go!

Hope it goes well for her x

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She'll need a pillow for the car to be positioned between her and the seat belt for the journey home from hospital.

She'll be best sleeping downstairs for a couple of days. A bed on a sofa with access to films and good books would be ideal. She'll feel like she's gone a few rounds with Mike Tyson after the surgery - very tender abdominally.

The gas used during surgery creates bloating for a few days. She'll likely be constipated, too. You can counter that with psyllium husk, Milk of Magnesia or similar. Avoid bananas, eggs and other blockers until her bowel movements are normal.

Her immune system will be lower after surgery so she'll need plenty of rest to give her body a chance to heal.

Best of luck for the surgery. x

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Oh, and a zinc supplement will help her heal inside and out. x

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I know you already have a load of responses but I really wanted to reply!

I’m only 21, I haven’t had a lap but my gynae told me that I do have endo. I wrote a post about all my symptoms on my blog and I had a response from my grandmas best friend, she said it was like reading her own story... I’ve had advice from her and that was to not let them tell me they didn’t find anything, some will look in the obvious places and if it’s not there then they assume you don’t have endo. She told me to meet the surgeon before and tell him it’s not about finding out whether it’s there or not, it’s digging to actually find it. Luckily for me, my gynecologist wants this one particular surgeon to do my procedure, I’m hoping this is a good thing and it means he will really dig for it!

Your daughter is 17, just a few years younger than me, I’ve had these symptoms since I was about 14/15 and they struggle to take us younger ones seriously - just keep pushing for her is all I’d say. I haven’t had anyone to do that for me, my parents live in a different country so I sort of have to fend for myself! It does sound like they’re taking he condition seriously, but just in case - keep pushing her case and don’t let them make her feel like her pain isn’t real.

Good luck for today, I hope it all goes well. Make sure you post how she got on, I’m really interested to know - I haven’t had my date yet for a lap! So need all the advice I could get really xx

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Caitlan,

I’m sorry you’re having to fend for yourself with your endo. I was in the same situation and I know how difficult it can be.

Are you getting enough emotional support?

If you want to know anything about the endo. process or the surgery, please message me and I’ll be happy to help. x

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Hi I have suffered from endometriosis since I was 16 although it wasn't diagnosed until I was in my 20s when I had my first lap. So it is possible that your daughter has it. I am pleased to hear that they are dealing with your daughter so swiftly although I know surgery is a big decision. Like your daughter my pain is also on my left side. My endometriosis is on my left side on the uterosacral ligament. They also discovered in my last lap and ablation that my ovary was stuck to my uterus. One thing that I used a lot after my surgery was one of those bean bags that you heat in the microwave. Good luck. I wish you and your daughter all the best.xx

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Hi good luck for your daughter today!! Let us know how your daughter gets on! Xx

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Hi, Sorry to here about your daughter. It such a similar story to mine, but I was several years old before they found what I had by then for me it was everywhere, including my lungs which bleed sometimes. The drugs these days are alot better and the lasers cut with precision, there are Hostipals like Queen Charlottes that have better knowledge. My 1st opp. was lifesaving as Bowel blocked, Left ovary found twisted off attached to bowel in bottock, right ovary with lesions, cysts, Adhesions folded across stomach, uterus squashed back, down towards spine, The pounch of Douglas had a large Adhesions that couldnt be completely sorted. Your daughter is lucky that they found it early and its being treated. My Love ti you. Joy x

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Wow... I have just come back to let you all know how my daughter got on and i am totally overwhelmed by all the replies from all you amazing ladies .....

Well, my daughter received the most amazing care today and has dealt with it amazingly,. Her consultant was amazing and came to talk me through her findings before my daughter was back from recovery. She found a small patch of endo on her left hand side which she said is only minor. But she was very concerned with her right side bowel as it was distended and showing it is inflammed. She is holding back on any treatment for the endo as she feels its the bowel that is causing her symptoms and we are to be referred to gastro for further investigations as she suspects something like crohns. My daughter is a little upset as she was hoping to be kind of sorted today but feels she has to now go through More procedures. Also the good part was her ovary is not actually stuck to her uterus. Just don't think we were expecting this kind of news, but i am going to let her heal from this before they start more tests. Thank you all so much for all the post op advice, she is tucked up on the sofa with her duvet, peppermint tea, hot water bottle, chocolates and a box set. I just hope they do still treat her endo seriously and not just pass it off as minor and blame it all on the bowel.. I probably should have asked more questions , but i think my mind went blank as i was just not expecting this extra information . Anyway i had better get back to my nursing duties and again thank you all so much for your concern and advice i think i could be a regular member here xx

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Im sorry that your daughter didn’t get the outcome you wanted from today but on a positive note, it’s good that they think they’ve found the reason for the pain. Fingers crossed they treat the endo and complete the investigations so she can feel better very soon xx

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Good news about the care, that’s certainly something we all like to hear as we all have a surgery planned in the near-ish future!

I will share a few concerns and ideas/advice with you, I hope it’s OK, ignore them if I am out of line.

It sounded like the surgery was not done by a BSGE specialist, is it right? I would be very concerned if that’s the case as it means he will have missed a lot of endo.

My reason for this is because if her symptoms are cyclical, endo has to be on the table. (having said that, symptoms don’t correlate with endo stage so she may have mild endo but causing lots of symptoms which cannot be ignored.)

Crohn’s is a very difficult diagnosis, I’m really sorry to hear about it; unfortunately, they do go hand in hand with endo sometimes as Crohn’s is auto-immune and endo is chronic inflammation. In fact one may have set off the other!

I would say Do watch out for any other autoimmune diseases as she has a higher risk for them.

Crohn’s is a bit like endo, it’s impossible to predict how it will affect her or how it will progress.

One thing is for sure, there are lots of treatments available like biologics that are very efficacious in keeping it in check (do avoid steroids if you can have a say, top down approach has shown better results -ie starting on biologics then giving milder drugs once flares are in check).

If you can have a say and depending on how mature you feel your daughter is, you may want to ask to be referred to adult or children IBD clinic. In paediatric clinic, there is a lot in place for kids to help them understand their disease, the only problem with that is then how to transition her to adult clinic as there is less support and she may feel let down when she changes nurses and consultants; if you think she can take it (listens well, understands her triggers, is adherent to her treatments) she could start at adult clinic straight away so there is no issue of transition.

As endo, a healthy diet and a good routine (mind and body) respectful to her body will help a long way, with the appropriate drug treatment.

Good luck and let us know how she is getting on 💛🎗🎗🎗💪💪💪💪💪💪💪💪💪💪💪💪💪

And, be strong mummy, she will be fine 💛💛💛💛

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