Possibly going to cancel Laproscopy, please help!

[heatherbelle1]

Hi,

I'm 20 and have been suffering with endo symptoms for about 2 years now (heavy bleeding, painful and irregular periods). Ive been to the GP who took me seriously for a while but then once i had a scan that came back clear, i got the impression that everyone thought i was exaggerating period cramps or something.

I have been to Gynae 3 times and a couple of weeks ago they decided a laproscopy was the best option. I said yes even although they were scaring me with all the risks and even said it was possible that they can't cure it or even can't see anything at all! Im a serious medical wimp and really really really don't think i can go for surgery only to be told theres nothing they can do or even worse that there is nothing there at all! Im terrified they think I'm just making it all up as there has been little physical evidence so far

I decided to go for mirena coil just over a year ago and after a year it fell out so then got another one put in a couple of months ago and when i went back 6 weeks later to get the strings checked, they couldn't find them. So the Dr had to use retrievers to find them and it was probably the most painful experience of my life! I knew something was wrong. But she found the tips of the strings and said that was fine. By the time i got home, i had started bleeding really heavily (i wasn't bleeding at all when i went that morning). So after 2 days of intense pain and bleeding, i phoned the clinic and asked if it was normal, I just knew it wasn't sitting right at all. They told me to go back but the Dr couldn't examine me properly as i was bleeding and very sore so they arranged an US for December (over 2 months away at that point!!). The pain settled after about 2 weeks but it was still there when i moved or tightened my stomach muscles. So about a week ago i decided enough was enough. I went back and asked for the coil to be removed but yet again they couldn't find the strings! So had to go through it all again but it eventually came out (yay!).

Since then the pain is much better and I'm wondering if it has been the coil not being in place this whole time thats caused me so much pain? But if the pain comes back, and i do have the lap, what if its negative?? Do they just tell you "oh there's nothing there, ok that means you're fine, go home". And i would be terrified to go back to the GP with a negative lap as i really do think she would tell me its all in my head, but i know its not

Also, how long after referral is the lap normally? Still haven't got a date in and I'm really panicking about the whole thing (as you can probably tell haha!

Thanks so much for reading the essay and listening to my rant! I know I'm just being a wimp but i really can't help it!

[IndieCindy]

Hi, if you know the pain is not in your head I really would recommend getting the lap. I had my first on 6 weeks ago, and at least I know what im dealing with. Also if your getting it on the NHS the waiting time is 12-18 weeks so you have plenty of time to cancel if you feel better.

[hayls]

Hi

Just wanted to say your worries and concerns are completely normal, if you look through posts of new members and those waiting for a laparoscopy on this forum they nearly all have the same concerns as you. Unfortunately for a lot of women it takes so much effort and fighting to get taken seriously that its only natural that we then start to doubt ourselves. It sounds like you have been through a lot so far, as you know the only way to diagnose endometriosis is by laparoscopy, you have come so far to get a consultant to agree to do the laparoscopy that you would be letting yourself down if you still have symptons and cancel it. Whatever the results of your laparoscopy, it will be better than not knowing. It's a real emotional dilemma where if they find endometriosis you will most likely first feel relieved that you were right but also devasted that you do in fact have endo and the reality that the laparoscopy is just the start of the journey, in contrast if nothing is found in your lap you may at first be upset as you may feel you havent got any answers but in fact you should be counting yourself lucky that you wont be facing the challenges of endo. Either way, your doctors have a duty to look after you. There are lots of things that mimic the symptoms of endo and if nothing is found in your lap but you still have symptoms you need to keep the pressure on your doctors to help you in finding whats wrong etc. If you do end up in this situation best thing would be for you to keep a very detailed pain and sympton diary including what you've eaten etc and then find a GP that is experienced or has a special interest in womens health issues and transfer to that GP, if your doctors surgery is reasonably big there should be at least 1 doctor that has above average experience of womens health issues and they should be more supportive of you. A diagnostic lap is a routine procedure, your consultant will do at least 15 a week and probably a lot more, yes there are risks but if you do have endo it would be much much better to know now rather than later and it may not be that easy to get another referral if you turn this one down. Good luck x

[Hidden]

I know why you are so worried. But you should have the lap.

You can have very small spots of Endo that can cause your symptoms. These spots will not show up on scans and the only way to be certain is to have a laparoscopy.

Your symptoms are affecting YOU and your quality of life. If you haven't got Endo that doesn't mean you've made your symptoms up, it just means there is another cause.

If you are unfortunate enough to have Endo, then it's important that you are diagnosed and looked after by a specialist. This is not only to reduce your symptoms but also to give you the best chance of remaining fertile so you can have babies when you are ready.

I had my first Lap at about your age. I only had small spots on my ovary. But I was told that Endo often gets worse and that if I wanted to have children I should have them as soon as possible. (Unfortunately I had another medical problem that can reduce fertility. )

I had my first baby when I was 23. My second at 27. And my third at 30. I am now 42 and still have major problems with Endo. But I'm so glad I had that first laparoscopy because if I didn't, the endometriosis and other medical problem, may have prevented me from having my family and becoming a Mummy.

Be brave and remember your symptoms are real. And you deserve investigations even if it is to rule out Endo.

Big cyber hugs to you.

Best wishes,

Barbara.

Ps the usual wait for a lap on the Nhs is approximately 3 months.

[heatherbelle1]

Thank you all so much! I really appreciate the advice and support! As you will probably know, its difficult to explain to people whats going on and so people tend not to understand how i can be fine some days and then bed bound others! Finding this site was probably the best thing i have done since they first mentioned endo. I think i will just have to go for it and then deal with it as it comes. I just know i will be crying on the day (yes, i am that scared of hospitals haha). How long roughly does it take to recover after the op? Im a gymnast and my coach is pushing me for nationals in February but i have a feeling that will be around the time of the lap!

[Olinka]

Please do not be in rush with laparroscopy.You meed to have good information before going to your surgeon You need to know what they will give you to prevent adhersions after surgery;they need to prepare you for after surgery treatment; how to recover; what to be aware of.Try to eat good food; like tomatoes they prevent adhersions; read good books about endometriosis; before going; it will help a lot lol Oli

[sunblock]

I suggest you do have a laporscopy the first time i was referred to a gyno nothing showed up on scans when they got inside me they said it was a mess adhesions and endrometirosis everywhere and all my insides were stuck yet nothing showed on the scans, the op made me feel so much better although at the time it wasnt great but you will soon recover. Im having my 2nd one on tuesday the 12th nov yes im scared but know in the long rung i will make me feel better, but this time some has shown up on an mri scan around my bowel which will explain my symptoms i keep getting hence making me very poorly.

[sparkleghost]

Hi,

Just to echo everybody here: please don't let fear take over and cancel your lap.

The sooner you have one the better. If you leave it, you are just giving it the opportunity to get worse.

There are never any guarantees at this stage because they simply don't know what is going on in there. They should in the very least be able to separate any adhesions, but will possibly be also able to excise or ablate any endo found.

You are right in saying there is no cure for endo. But excising the patches of it can provide relief for up to 3 years - wouldn't that be wonderful in comparison to all the pain you are in now?

Once they know what stage you have and where it is, you can consider the best treatment options. You should get your follow up 4-6 weeks after the lap - chase them if you don't hear from them.

Good luck,

Rach x

[helen979]

Hi

Please go for the Laporoscopy. During 8 months of constant pelvic pain and lots of other endo symptoms I had 2 normal Abdo ultrasounds and a normal transvaginal ultrasound. I kept going back and forth to my G.P and to the hospital and finally on Tuesday following a Laporoscopy I have been diagnosed with Endometriosis in quite a few places that explains all of my pain. I was in the same boat as you I felt as though people thought I was making the pain up as they just kept fobbing me off. Stick to your guns you know when you're in pain and its your body's way of telling you something is going on! Don't worry about being nervous and getting upset at the prospect of surgery its totally normal. Im a Nurse and even I had a little cry before I went down to theatre. Best of luck hope it all goes well

Helen x

[bugqueen32]

You've had a horrendous time I feel so sorry for you- I actually had so much help from Mirena coil (but with hindsight do wonder if the coil eventually did contribute to my recent problems ) over last 10 years, I'm 52 and was diagnosed with Endometriosis when I was 25 and had a number of procedures over the years but to be informed and be in touch with others with same conditions is really important.

I had a terrible year last year with debilitating pain that even stopped me walking the dog, my housework, gardening lots of things I'm used to even after 12 visits to the GP with the same symptoms (they did do lots of bloods all normal, ad ultrasound scans all normal ) only to be told to go away and" live with the pain lots of women have pain just take Paracetamol as its probably IBS " but I just knew something was not right..! (as i work at a GP;s and had some knowledge of how things work I returned after booking myself in with a Gynacologist with the NHS Choose and Book System and requested a referral letter from on the understanding GP;s at my Practice ,,,, 12 months from the start of all my pain I finally get an answer by a Laparoscopy my Endo had returned and stuck my bowel together and developed Fibroids <<< you have no idea the relief and gratitude I felt for my Consultant, I would never have known with the Lap, I did end up having to have a full Hysterectomy in April but much better (apart from HRT probs that's another problem all together !)

so Please don't cancel you procedure, it is the only way to really see what's happening inside, and you can move forward with you life

all the best Wendi

[Sheri26]

The op it's self really isn't that bad, I quite liking being put under, please do not fear and worry about it, but would recommend taking arnica 6c before the op, peppermint tea and a v pillow, oh and lots of yummy food and plenty of chocolate, just because xxx

[heatherbelle1]

Hi everyone! Again thank you all so much for your support! Got a letter in today and guess what?? My op is a week on thursday! Did not expect it to be that fast at all! That will be 3 weeks from referral to op! Crazy. As you can guess I'm panicking already but i think you are all right, it will be worth it in the end. Luckily i need to keep myself busy re-arranging work shifts to go around the op so hopefully that will take my mind off it!

[Joseph87 in reply to heatherbelle1]

Hi - I hope you aren't too nervous, I had a lap 4 years ago and am currenlty waiting for the date of my second, I can't believe how quick yours came through, did you put yourself down for cancellations? I did as I don't want to wait for 18 weeks, but at the same time, I nervous that it'll be really quick!

[heatherbelle1 in reply to Joseph87]

Hi! Nope didn't put down for cancellations! Still no idea how this has happened! Hope yours goes ok and you get a date fast! I know, my friends are saying "thats great its so fast, better to get it over with" but at the same time its really scary!! Had pre-op today and i think I'm more nervous after that haha!

[katy90]

hello im 22 and in the same boat i was suffering with horrendous pain and heavy bleeding i was referred to a gynae at the age of 15 they did scans and said everything was normal i was put on the pill at thirteen and told i just had bad periods but i kept going to the doctors and saying its not right i missed one week every month off school at the age of 20 i was referred back to gynae and i had a Laporoscopy with in a month of referral and they found that i had endometriosis. i know its scary having an op but when you find out why your in so much pain its worth it. hope this helps settle your nerves a bit you are not alone. luv katy x