5 months after my first lap and Im having to go in for more surgery.Any advice would be really appreciated!

[anneliese]

Hello everyone,

As I have mentioned previously I had my first lap/surgery in september 2011 which was when I got my official diagnosis of endo.Five months later and i have had to leave my jobs because I have been so terribly ill since then.I have not have ONE day gone that i dont feel dreadful! After begging my GP she referred me back to the gynaecologist, now the first gynae I seen made me feel even worse, she didnt listen to what I was saying,or my concerns instead she basically said - well we are all women we just have to deal with it!At which point I said to her , "oh do you have endometriosis as well then?"she replied "no" at which point I burst into tears out of pure frustration.I asked her about the location of my endo to which she told me I had a little in my pelvic cavity.Two days after my appointment I called the head of the gynae dept at my hospital-his secretary took my message, and she actually called me back ten minutes later to tell me that the head gynae wanted to see me in two days time.

I kid you not it was breath of fresh air to actually talk to someone who understood me and knew that what I was experiencing wasnt normal.I asked him about the location of my endo, I had it in peritoneal(sp?)area-left and right, the pouch of douglas and loads in my cervix- so much for just a little in my pelvic cavity eh?Anyhoo my gynae has put me on the list as an in patient for more intense surgery that apperently the lasers are stronger and the surgery is aimed at getting the endo that is alot deeper rooted.

My surgery is expected to be around April .

Does anyone have any advice for me?Has anyone else had to go back in for surgery this quickly?Also does anyone know about this more "intense"surgery and getting kept in as an in patient?

Thanks everyone and sorry for ranting. x

[crystal_willow]

Wow.. well firstly well done for being assertive with the healthcare providers! thats not always easy. I have not heard of this more intense surgery but I will certainly remember it and be very grateful if you can fill us in on the difference/procedure when you find out more xx

There is something on the NHS map of medicine called "laparoscopic helium plasma coagulation"

This is something doctors can do but at the moment it's officially part of a clinical trial. laparoscope is used to direct an isolated beam of helium gas at endometrial deposits to destroy them.

As it is still being trialled there is oficially uncertainty of the efficacy of the procedure but you should be informed of this if this is the proceedure they want to do with you.

If its this or something else please let us know xx

this is the map of medicine for endo:

healthguides.mapofmedicine....

and the bit I just quoted you can find by clicking on "Endometriosis confirmed and treated during laparoscopy"

xx

[anneliese in reply to crystal_willow]

Hello Crystal Willow, usually I wouldnt be as assertive but I just got to the point of being so fed up with being passed from pillar to post that I just plucked up the courage to phone up the gynae's secretary and say that I wasnt happy with the gynaecologist I had seen and that I would like a second opinion.So I would completely recommend doing this if you ever have any problems or if you are unhappy with one of your consultations, its well worth a try and it really did work in my favour!

Of course I will fill you in as soon as I know more about the surgery/procedure.I would imagine I may get more information on it when I go for my pre op assessment , and ill ask some questions about it and I can let you know then.

Also thanks very much for the link, that was so kind of you to go out of your way to help me : )

Hopefully it wont be long before I can get back to you with more information,because Im a little bit anxious but also excited that this might be a really good treatment for me and that i might get back to being like a normal person again!

Thanks again !

xxx

[Fletch in reply to crystal_willow]

This is really helpful, thanks Crystal Willow... I've written this 'laparoscopic helium plasma coagulation' (never heard of it?!?) down and will ask about it on my next appointment with my specialist. Cheers for the link! x

[crystal_willow in reply to Fletch]

here is some info I found: laparoscopic helium plasma coagulation... a new (but not nessisarily better) way to destroy endometrial lesions in surgery)..for the curious among you....

Laparoscopic helium plasma coagulation of endometriosis is another way of vaporising endometrial deposits. Using a laparoscope, an ionised beam of helium gas is directed at endometrial deposits to destroy the affected tissue.

(from ukpmc.ac.uk/guidelines/HIR/...

overview:

nice.org.uk/guidance/index....

Info for patients considering/being offered this treatment:

nice.org.uk/nicemedia/live/...

[KayL]

You will probably have a pre-op assessment before your next op - is that the case? If so, write down all the questions you have and take them with you. You will sign a consent form so should know the detail of what you are signing up for.

I had 3 ops in less than 12 months, 2 were laparotomy where I was opened fully.

Good luck.

[Fletch in reply to KayL]

Hi KayL,

Just wondering, did the laparotomy show you anything that a laparoscopy hadnt? Is it a more thorough examination, or are they quite similar? I don't know whether it is something that I should insist on having, as I had 2 laparoscopies last year and still in pain everyday. I'm no further forward at all. I am convinced it has spread further. Would a laparotomy show this?

[KayL in reply to Fletch]

This is a long story!

A laparotomy is where a caesarian type incision is made to the bikini line and access to the uterus and ovaries is easier in the case of large cysts being present - or where there is too much damage for a laparoscopy.

A laparoscopy just refers to the 'key hole' technique. They can be used for diagnosis or treatment depending on the severity of the disease and the technique of the surgeon.

I will tell you my story and it might help you to understand a bit more.

I had a miscarriage in Sep 2008 and on the scan it was found that I had very large endometrioma on both ovaries (chocolate cysts). I was referred to a gynaecologist and was consented for a laparoscopy +/- laparotomy. The reason was that the cysts could have been too large to remove laparscopically. I was told that I wouldn't know until I came around from the anaesthetic - I knew when waking up I had had a laparotomy!

I went for a follow up appointment, expecting to be discharged, only to find on the repeat scan that the endometrioma had returned on the left side and was bigger than the previous one (12.5 cm to be precise). The consultant gynaecologist didn't really know what to do with me so passed me on to a consultant gynaecologist with expertise around endometriosis. He booked me in for a laparoscopy as he felt that he could remove the cyst on my left ovary despite it being bigger than the previous one. Again I woke up to find that it didn't feel so bad - I was told that the laparoscopy had to be abandoned as the endoscope could not get access to my ovary due to the bowel damage and if continued could have ruptured my bowel. I was then booked in for a laparotomy, a colo-rectal surgeon was also present. I had the cyst removed and lost my left ovary and fallopian tube.

The recovery from laparotomy takes a while as it is major surgery. Since then the pain started to return after 6 months and I am now on a clinical trial and am on Decapeptyl (puts me in the menopause) and Livial 'add back' (HRT substitute). There are side effects but as always endometriosis is about a balance of treatmeng versus symptoms.

Looking back, I have had endometriosis for 25 years. As with many many others went to see my GP complaining of very painful periods but was told to take co-codamol. I hasten to add that I am a nurse by background (although not registered now) and still found it difficult to be taken seriously.

Hope this helps you.

xxx

[Fletch in reply to KayL]

It has helped, yes thanks Kay... From your explanation Im not sure whether a laparotomy is the option for me, as mine is no-where near as severe or large as yours sound's/sounded. I'll keep exploring other options... Thanks though. You sound like you've been through quite an ordeal. Hope your feeling better now

x

[anneliese]

Hello Kay,

yes i have a pre op assessment scheduled for sometime in march, so i'll write down any question i have in prep for this!

You poor soul, 3 ops in that time scale : (

Also I see you are a volunteer, Im really interested in doing some volunteer work, especially since i'm not working and I would really like to help out in some way.Any tips on how you got started?Thanks

xxx

[Fletch]

Hello Anneliese,

Well done on being so persistant, and congratulations that some-body is doing something about it! You've been really lucky. You've inspired me to get onto my specialist, as I'm the same (i.e, just being passed from pillar to post). There really is only so much we can take. I saw her recently, and she just said there wasnt much more that she could do and passed me onto a bowel person (?!?!) telling me that it must have spread to my bowel. I dont buy it. I just think that they don't know what else to do so they just want to get rid of me! I'm going to do what you have done and ring the secretary later.

Please let us all know what operation they are talking about, as it might help many of us on here. And the best of luck too! Sorry I can't advise you on what it is your having done... Ive never heard of the operation that has been mentioned above. Maybe it is that?

Best of luck,

Aimee

[anneliese in reply to Fletch]

Hi Aimee, I know I have been so lucky, I almost cant believe that I actually managed to wangle getting an appointment(and within 2 days of speaking to his secretary!)To tell you the truth I could have punched the woman I had seen the previous week,who described a period as a "crying womb"and believe it or not she was more interested in my bowels also!

Aimee I would completely advise you to try and get a hold of the number of the clinic you attend and the name of the head gynae there, and just phone up and say you really were not satisfied with the outcome of your last appointment and you would like someone to look over your notes or even to get a second opinion .Do not just settle for what they have said at your last appointment.

Of course I will let you know as soon as I know more about the procedure, I am almost positive it will be the same as the one that crystal willow posted,but !I will ask as much as I can when I go for my pre op assessment and will let you know!

Oh and I sent in my appeal a few weeks ago to the ESA people, it was like an epic!It seemed to go on forever, my mum even said "oh bloody hell Anneliese ,they'll never read all that!"but I had to get my points across!

Hope your well!

Anneliese xxx

[Fletch in reply to anneliese]

It's such brilliant news, I'm really happy for you. Obviously it's a bit daunting that you've got to have more surgery, but, if the outcome is positive, then fab! What more can you ask for!? I am 100% going to do the same, and ask some-one to re-look at my notes. Get a second opinion. I just know it isnt my bowel. I know it's the endo. And I'm paying the price for her not being able to help me further. Thanks for giving me the 'umph' to get the ball rolling.

And, as for your ESA appeal.... I'm pleased to here you were as thorough as I was with my letter. The more epic the better!!! Mine was 8 pages long, and covered absolutely everything. I was going to email and tell you actually... They wrote to me last week telling me that my letter for appeal had been 'accepted' and the was on the list for appeal. And, they backdated my money, which I was sooooooooo thankful for. I'm now recieving a basic benefit, which I am hugely reliant on, and I will get that up until the point that the appeal goes to tribunal.

Have you heard the verdict on your letter? Let me know when you do, and good luck. Who did you say your 'reperesentative' was going to be? I had no idea who to put so I just said I would let them know closer to the time.

Anyway, again... well done on not taking a no for an answer and inspiring us other ladies to keep pestering our own 'specialists'. Term used loosely!!!

Take care my lovely

Aimee xx

[anneliese in reply to Fletch]

Hi Aimee,

Yes I got a letter saying that they had accepted my appeal(it only took them two whole weeks!) but thats all it said nothing about a reperesentative yet but that could still be to come.I have no idea what I would say to that!

Also the best of luck to you with your "specialist"-please let me know how you get on and remember dont be afraid to sound pushy, at the end of the day it your health and your wellbeing you need to think about!

Good luck lovely

Anneliese xxx

[KayL]

Hi Anneleise

Yes, I am a trustee for Endometriosis UK and answer some posts on Healthunlocked as a volunteer. If you go on the endometriosis uk website (go through the Endometriosis UK blog section at the top of the page) you will see details for volunteering - you could be a helpline volunteer or get involved in a local support group - there are lots of options. I am also doing the Snowdon Horseshoe Challenge in May with some other trustees and Endometriosis UK staff to raise some much needed funds, so look out for information! xxx

[anneliese in reply to KayL]

Thats brilliant, thank you for the info, I would love to help out in any way that I could.Im going to go the website right now to see what I can do, thanks again!xxx

[Sammy1986]

What is the reasoning for more surgery? They know they didnt get all of mine last year in my LAP but they refuse to let me have another one - just putting my on injections instead x

[anneliese in reply to Sammy1986]

Hi Sammy!

To tell you the truth I dont know why other than the gynae was worried that my symptoms had worsened by a great amount and the fact that I was able to carry out day to day activities like before, e.g.work,go out anywhere .Sorry to hear that they are refusing to let you have more surgery.Have you maybe considered asking for a second opinion on that Sammy?

Hope your keeping well, Anneliese x

[Sammy1986]

Thanks for replying Anneliese - sorry for the delay!

You sound like me, I struggle to do simple things and have to look after my 2 year old and 4 year old which makes it really unbearable. I feel like a useless mum at times. Also had to teach my 4 year old how to call my mum and dad when I faint each month with the pain. This really upsets me. I am in excruciating pain and really wonder why they are pamming me off with injections and not having another good go at the endo with surgery. I told my gynae that its back and worse than ever, but she didnt mention any more surgery. After 6 months of these injections, im still going to have all the endo there that they missed so im always going to be in this amount of pain. If they could lessen it that would be magic! Pain killers only make me drowsy they only take away so much of the pain.

Sammy x

[anneliese in reply to Sammy1986]

Hi Sammy, I feel so sorry for you having to cope with this and being a mum of two, and that absolutely breaks my heart that you had to learn your four year old to call your mum and dad( I know how this feels from a kids point of view , my mum has been type 1 diabetic since way before I was born and would often take hypo's).Please dont feel like your a useless mum, you are doing your very best and its not your fault you have been lumped with this horrible disease. I hope to god that your gynae wisens up and realises that you need more surgery and that they injections they have been giving you just dont work, you have tried them for 6 months and they havent done you any good.

Is there any other gynae you could maybe contact for a second opinion?

I can empathise with the painkiller thing , I'm constantly like a zombie and yet they dont touch the pain. Although I will say Ive recently been put on amitriptyline 25mg, which has been helping me get a sleep at night because before I wasnt getting a wink. Has your DR put you on anything like this?because it might help you get a wee rest, I bet your exhausted having to run after two kids aswell as look after yourself!

Hope your taking care of yourself and you are well Sammy

Anneliese xxx