Diagnosed with Endo but Positive Lap, don’t be frightened ladies!xx

[Jenjen87]

Hi All,

I thought I would share my positive story on my laparoscopy.

I suffered with many exhausting and unusual symptoms relating to my endo and also the usual symptoms that comes with menstruation. I’ve always put up with the symptoms as I was always told I was normal, nothing looks wrong, however things took a turn for the worst last year and this year I have been off for months. My body was giving up inside but because I looked well and they couldn’t find anything I was basically told I probably have a bug. Which again, I understand, they were as confused as I was and then I went and saw a specialist and was diagnosed via lap with endometriosis.

I felt free, I was elated, as much as I’d love not to have it, the feeling of freedom of not feeling crazy, as if I was some anxious young lady who gets stressed etc, I was actually given a new lease of life, hope.

I was petrified of the laparoscopy, i knew I would be out of control and I didn’t like it but please ladies, there’s nothing to be scared about. The process and procedure was excellent.

Everyone was very caring, I had my pre-op so I knew what was going wrong and all other checks for health were completed. I went in at 7, and sent to theatre at 10, and had a number of happy, helpful nurses to look after me and have a joke with and also to put me at ease.

I had some sexy socks to put on which I’m still wearing now, and the pants are amazing, very big and comfy. You need comfy panties. I mooned the boyfriend to show him the pants he had to look forward to😂😊. I did take my own in too which were seamless and lace, very light on the abdomen and pelvis and did wear them after.

You have a gown also to put on. The anaesthetist will talk to you about how this part works and this was the best part because this was my nervous section. Again he talked me through the process and asked me about any worries. They will monitor you through the laparoscopy.

They wheeled me down and chatted to me like a human, started the anaesthetic and I don’t even remember going to sleep it was that chilled.

Your nerves won’t go but you can work with them and the nurses should too.

Afterwards I woke up, which felt like seconds and I was done. The surgeon and nurses come to see me and told me I had endo but it has been removed, what they could see anyway.

Strangely I was elated, still high on general but I was free from being trapped in an illness that seemed fake to the outside world.

They made sure I was ok, fed me and made sure I could wee. I think everyone has to do this. Gave me some notes and I was on my way. Walking slightly funny but it’s expected, put a positive on it and try and giggle. A smile a day no matter how hard your day is goes a long way.

The next couple of days I felt like a new person, they had removed all the endo they could see and put the coil in. It sounded to be a lot of endo and that’s why I felt so different, so well and healthy, I only ever functioned daily maximum 50%, then menstruation probably 20/30%.

I’m on day 4 now after my lap and one bit of advice I really would say is talk to the doctors about constipation and laxatives. I was elated but this bought me down. However as soon as I passed bowel movement I was back to just discomfort and little pain again.

The anaesthetic and so forth makes you constipated and the work done can make it uncomfortable to pass stools.

You will need some painkillers, it’s expected but I’ve only used the strong ones once😊. The doctors Will advice on this too.

This message is just to reassure you all that you will be ok and lap isn’t as scary as you may think.

I wasn’t stable beforehand but stay positive, you are in safe hands. Message me if you need anymore advice.

My emotions about my relationships around me are affecting me more than the actual op and this is slightly hard but if you have many people who want to support your also.

Good luck to anyone going in for their lap, you’ll be fine.

Sending hugs to everyone who has been through the lap and who have had to go through this. It’s hard but you’re all amazing and you make me see there is a light at the end of the tunnel 😊.

Much love.xxxxxxxx

[SG82]

Hi

I'm in the same boat as you. Got it done on Tuesday and am going through the terrible shoulder pain when I stand up. What were your symptoms before surgery?

I've had so many myself that I never would have put them all down to having this condition. It's too soon to notice any difference for me yet.

Thanks.

[Jenjen87 in reply to SG82]

Oh I really hope that does go soon, I get how uncomfy that can be! Can you still speak to your nurses now about that too? I know there is supposed to be some gas relief products but I haven’t used them, yet...

It’s a long list, quite exhaustive😊:

Heavy, prolonged, painful and no structured menstruation

Cough for over a year

Headaches

Heart palpitations

Aneamia

Faint

Brain fog

Shooting pains in back and abdomen, down right side of my leg and bowel

Fever

Sweats

Tremors

Dry skin

Painful achy joints

Breathlessness

Chronic fatigue

Chest pains

Craziness 😊

Constipation

Weight loss

Sinus problems

Lower and upper back pain

UTI symptoms

Weeing blood

Pain with sex

Random loss of use in legs

Crawling legs

Burning abdomen

Loss of appetite but hungry

Nausea but never sick

Weak muscles

Nails and hair were brittle too

Abdominal swelling/bloating

Were your symptoms similar lovely?

I think the array of symptoms comes from a low immune system due to body fighting the endo so I don’t think they are all linked but I felt like a drama queen with all them 😊. The thing is you want to believe them that nothing is wrong but the way you feel inside it was so hard not to.

From being a weightlifter and fitness freak to not being able to walk something seemed wrong.xx

How are you feeling tonight? How’s the shoulder?Xxxx

[SG82 in reply to Jenjen87]

Thanks for your reply.

I completely agree. I just knew there was something wrong with me even when not on my period.

Similar symptoms actually but have put them down to IBS or food intolerances/parasite.

I have had:

- brain fog / lack of concentration,

- blurred vision,

- uncomtrollable gas when eating and after eating

- anxiety and depression,

- a change in body odour,

- when menstruating: blood clots, pain down my legs which I cannot stand with, nausea and an urge to go to the number 2 which could last for hours on day 1,

- very irritable due to never feeling well

- mucous in stool and having an urge to go but could not and not being able to finish

I'm just hoping that the bowel problems will stop after getting the endo removed.

Since you are so active, I'm just curious when you think you'll be going back to the gym? I'm dying to go back already but have been reading that at least 2 weeks should be taken to rest.

[Jenjen87 in reply to SG82]

I can’t believe how similar the symptoms were/are! I had the same irritability too, everyone and everything just annoyed me. Even my boyfriend got it and all he did was look after me.

That’s hard, it all really is though, we’ve done well.xxx

I really hope they do! Fingers crossed for you, I’ve heard loads of great stories to say symptoms disappeared after. Did you have the mirena coil put in too?

Same as you lovely, I’ve read 2-4 weeks and not heavy lifting in that time either 😱. I think I’m going to wait till I see the doctor in 2.5 weeks and ask his advice from that time onwards. I can let you know, if you’d like. I’m hoping it won’t be much longer though. I always found that helped the pain too, I still had it but always better when doing that.

Xxx

[SG82 in reply to Jenjen87]

Thanks for your reply.

No, didn't get the coil put in. I've no idea of my treatment plan yet. I'm guessing a pill that will stop menstruation which I'm dreading because of the side effects.

I got my lap and excision done on Tuesday and am meant to be returning to work on Monday as my cert said today, Saturday. I have a lot of walking to and from work and buses so I don't think I'm ready - I'm still walking very slowly. Would anyone think that returning to work within a week is a bit too soon?

Could anyone also tell me when they returned to doing workouts? I'm going away in 6 weeks and have a lot of work still left to do to get into a bikini 😖

[Jenjen87 in reply to SG82]

I hope they give you a plan soon to help. Let me know what they suggest to you🤞🏼.xx

If you are not ready Hun then get signed off. I had two and defo wouldn’t be ready Monday. Went out for my first walk today and I was zonked. So remember as my dad says, slow and steady wins the race ❤️.xx

[Hidden in reply to Jenjen87]

I so relate to those systems. My doctors for the last 30 years diagnose everything but endometriosis. It was only when a cyst burst and reformed June that they started to listen.

[Jenjen87 in reply to Hidden]

That’s crazy you had to get to that point! And 30 years too, that must have been so hard too. Hugs.xxx

[Hidden in reply to Jenjen87]

It's amazing what our bodies can put up with before they tell us that's enough. I think mine is at the That's enough stage at present.

[Jenjen87 in reply to Hidden]

It sounds like its at that point, when was your date for the op?xx

[Hidden in reply to Jenjen87]

I have second consultant appointment on 12th October for biopsy results. So should be any time after that hopefully.

[Jenjen87 in reply to Hidden]

Good luck 😘.xx

[Judan]

Really glad you feel so positive, and you'll feel even better once recovered fully. Xxxx

[Jenjen87 in reply to Judan]

Thank you, I cannot wait for that day 😊. I hope you are doing well too ❤️.xx

[Jenjen87]

I can’t believe how similar the symptoms were/are! I had the same irritability too, everyone and everything just annoyed me. Even my boyfriend got it and all he did was look after me.

That’s hard, it all really is though, we’ve done well.xxx

I really hope they do! Fingers crossed for you, I’ve heard loads of great stories to say symptoms disappeared after. Did you have the mirena coil put in too?

Same as you lovely, I’ve read 2-4 weeks and not heavy lifting in that time either 😱. I think I’m going to wait till I see the doctor in 2.5 weeks and ask his advice from that time onwards. I can let you know, if you’d like. I’m hoping it won’t be much longer though. I always found that helped the pain too, I still had it but always better when doing that.

Xxx

[Georgia03]

I am so glad for your post! It has made me feel much more positive about having my Lap on the 6th October thank you! I hope you feel much better soon, did you agree to having the coil fitted beforehand? and did you have someone go to and wait at the hospital for you? Hope you are well xx

[Jenjen87 in reply to Georgia03]

Thank you for your reply, let me know how it goes please too. Be thinking of you.xx

I did agree to having the mirena coil, that did worry me but that’s because of what I am like with hormones and I’ve had the copper coil before. However apart from the random bleeding, so far so good😊. Are you thinking of having it?

I had my mum and boyfriend to go with me. You need someone with you they say for 24 hours. I wanted someone there and it does help and make it easier. Are you taking someone?

Xxxx

[Georgia03 in reply to Jenjen87]

Thank you I will do. Oh right I've read that a few people have had the coil fitted during a Lap and it was worrying me! It's not an option I personally want to take. Glad your recovery is going well! I think I will have my mum and boyfriend too, I didn't know if they would need to stay and wait but thinking about I I will feel more comfortable with them there xxx

[Jenjen87 in reply to Georgia03]

I genuinely liked having the coil as I was terrible with taking pills etc daily but I know a lot of people aren’t keen so can see why you aren’t keen too😊. It’s what is easiest for you lovely too.

If your anything like me having people there also took my mind off it, we could talk about anything other than what was going on and only had to deal with the nurses regarding what was happening.

All the best Hun, take it easy and wish you a speedy recovery too.

Thank you for your kind words.

Xxxx

[Hidden in reply to Jenjen87]

That's interesting. I've been told to have the coil. I'm a little nervous as I never found the pill did anything to help. I must have tried nearly everyone going over the last 28 years. The doctors also gave me a contraceptive injection when the tablet form of the pill did not help . That was supposed to help with the bad periods and pain. It made me bleed for three weeks and have one week off. so my periods went the opposite way round. that was quite painful.

If you don't mind me asking, How does the coil feel and help your body at present ?

[Jenjen87 in reply to Hidden]

The coil feels fine so far. You can’t even feel it Hun. The hormones (I believe) are only released into the uterus so are not supposed to get the same affects as the pill because it’s not travelling around your body.

I’m glad I’ve got it so far so giving it a good go😊. I was the same as you with hormones but I think this seems to be working so far.xx

Do you think you’ll possibly get it?xx

[Hidden in reply to Jenjen87]

I think having chatted to yourself and others who have the coil fitted I will give it ago. Thank you for your honesty and explaining how the coil feels xx

[Jenjen87 in reply to Hidden]

Anytime 😊. It might also help to know it’s incredibly easy to be taken out if you don’t click with it too😘.xx

[Georgia03 in reply to Jenjen87]

Yes I guess with the coil each person has different views, if it's working for you then I'm glad I am definitely going to have my partner there with me and my mum like you say it will take my mind of things and give me comfort. I had my pre-op appointment today which has made me feel much better! They did so though that they won't remove the endo if it's found, that will be done separately. Thank you! Xxxx

[Jenjen87 in reply to Georgia03]

Sounds positive Hun. Your dealing with it all well. It’s nice to see 😊. The pre-ops are good too aren’t they, all these questions finally can be answered. What is your date Hun? You may have said. Are you feeling at ease still?xx

Oh bless you Hun, are they helping you manage it after then if they aren’t removing it?xxx

[Jenjen87 in reply to Georgia03]

If you feel more comfy I would, it does relieve the pressure.xx

I have always been stubborn and always had the view of, I will deal with this on my own and I wanted to do the same with this but I can say hand on heart I’m glad I didn’t, support was nice it have. Take them along 😊.xx

Good luck lovely.xxxx

[Emiilykatex]

Your post has made me a little less scared, so thank you!

I have never had surgery before and am awaiting a lap. I'm scared of being put under but also excited about finally moving forward in getting rid of some of these awful symptoms!

I have this crazy fear of being put under but still being able to feel everything 🙈

Anyway, I'm glad your lap went well and I hope you have a speedy recovery!! Xxx

[Jenjen87 in reply to Emiilykatex]

I was very scared with the anaesthetic too and you will be no matter what I say as it is the unknown 😊but that was the least part I didn’t really think about in the end. It was honestly fine, and I woke up dopey as you like, I do tend to have moments.

Told my boyfriend all the nurses etc were my friend and they gave me a lemon lollipop, they didn’t it was a cotton bud with Lemon on it😂. Some people get nauseous with it etc but keep thinking positive and fingers crossed yours will be like mine.

It can be a nice experience 😊.

It’s nice when you finally know isn’t it, the symptoms are a nightmare. I hope they help you manage them and take you away from the living nightmare we all live in😘

Good luck and hope all goes well, will be thinking of you. Let me know anytime if you have any questions.

Hugs.xxxx

[Hidden]

Hi JenJen 87

Thank you for posting your experiences. I'm waiting to have a 6cm chocolate cyst and to see how bad the endometriosis is at present. I have second consultant appointment on 12th October. I'm hoping it won't be much longer after that. I have been very worried. The build up of emotions and the anticipation it giving me anxiety. So reading your wonderful worded post has put me more at ease.

I wish you a speedy recovery and send you ((hugs)). Xx

[Jenjen87 in reply to Hidden]

Im so glad it has helped a little😊. And here anytime if you need a chat.

I hope they get you in soon. The waiting is the worst because of the turmoil that you feel. I had major anxiety too so I completely understand. Do you listen to any form of meditation music, one you like. It didn’t help a lot but it did sooth me sometimes. Just to take me away from my thoughts ❤️.

I hope you can get in soon, shout me anytime. I’m here lovely and I understand 😘. Wishing you a speedy recovery and lots of hugs too.

Xxxxxxx

[Hidden in reply to Jenjen87]

Thank you . Just reading your post was a great help xxx

[Vicky2708]

I've got my diagnostic lap on Monday - feeling a tad apprehensive as have had a bad experience before, albeit at a different hospital. So glad to hear of a positive experience, makes me have some faith in the system!

From what my Consultant said when I last seen him, this procedure is solely to diagnose. I dread to think how long I am going to have to wait for any further procedures just want it all to be over or at least, manageable.

Hope your recovery continues to go well <3 and thanks for sharing xxx

[Jenjen87 in reply to Vicky2708]

Fingers crossed for this hospital for you🤞🏼, it will go well 😘. Keep me posted.xx

Maybe double check with him about another procedure after? I had my endo that could be seen removed at the same time. Worth asking again Hun.xxx

Manageable is all we need😊

Good luck for Monday and here if you need anything lovely.xxx

[Vicky2708 in reply to Jenjen87]

Thanks Jenjen87 did your Consultant say about doing that or did you request for it to be done at the same time? Manageable would be marvellous I may well send you a wee message soon xxx

[Jenjen87 in reply to Vicky2708]

Anytime 😊.xx

Initially he said he wasn’t going to remove anything but put the coil in if I have it but I think I had a lot by the sounds of it so he ended up removing it 😘. I hope it’s the same for you 🤞🏼. Yes do that will be lovely 😊.xx

[Jenjen87 in reply to Jenjen87]

Sorry Hun, meant if you have endo I hope they take it out.xxx

[Jenjen87]

Just wanted to give everyone some more reassurance on stitches if anyone is worried about them. My bandages were removed and the cuts are tiny 😊, and neat. I expected two inches and they are nowhere near that at all. 1cm. Was a lot more relief again as that was something else on my mind. Much love.xxx

[Leanne_Doyle]

Hi ladies ,

I had my op about 3 weeks ago now and can be another reassurance that it will all be fine for those waiting to go.

Now, I was a bit stubborn and did return to work after 6 days. I had rested a lot and had done a few short walks up to that point but felt like I just wanted to try and get back to normality. I would say looking back it was probably a few days too early as although my work isn't too straining it was very exhausted and ended up having a very emotional day where I think my body wasn't quite up to what I thought.

As for the shoulder pain- heat is an absolute life saver. I found a hot water bottle was far better than pain killers.

I'm still a bit bloated and struggling to fit into some trousers. Im not sure if this is normal after 3 weeks ?? It could be the biscuits I've allowed myself as comfort haha.

I'm also not sure how long to wear dressings for? I pretty much change them daily and always let them dry properly after washing. If they weren't on my clothing line where they can run I wouldn't wear them so frequently but I don't want them rubbing. Has anyone been told how long to wear them for?

Thank you

Leanne x

[Jenjen87 in reply to Leanne_Doyle]

This is great news, I’m buzzing yours went well.

It is nice to hear about work too as i was thinking of going back Monday as I’m going crazy being inside but I can’t really walk 20mins without struggling atm. The docs have signed me off till the 9th but I was going to decide myself 😂. You helped so thank you.xx

I’m dreading the emotions again, I’m all over the place as it is 😂😊.

Love a good biscuit 😊.

I haven’t got mine on anymore lovely so cannot say for the dressings. I wore them for a week and they were off but i know what you mean about the trousers as Mine still catch. Sorry I can’t be of anymore help there. Hope you get an answer soon 😘.xx