I might have endometriosis

Hi all

I went and saw the gyn today and she booked me in for a laparoscopy and hysteroscopy on the 17th March to see if I have endometriosis.

I've been reading up about it and it doesn't scare me half as much as actually having the surgical procedure to find out if I have endo!! I'm a wuss! But I've never been in hospital before so yeah I'm a bit nervous to say the least.

Has anyone else had a laparscopy before and what was your experience with it? Is it really soo bad? Or am I worried about nothing?

8-[

Thanks guys

Lyn

Hi Lyn

I have had 2 of them, and it is only day surgery, so you will go in during the morning and be home that night. you will be feeling a bit sore and sorry for yourself though. Also they fill your stomach up with gas to move organs etc out of the way, so if you get a bad pain in your shoulder after you are awake don't stress as it is perfectly normal as it is from the gas apparently and is quite common.

Are you having dye studies done as well. If so beware of peeing the colour of the dye for a day or two LMAO. I was back on my feet 24hrs after the surgery.

Love

Lyn - I've had 11 of them because I have severe endo. Before you go there you need to know that adhesions caused by surgery can inhibit fertility later on - a catch 22 - it's not something to take lightly. Who is your surgeon? I definitly recommend getting a second opinion.

My surgeon is Dr Yovich at Pivet - he is hard to get into to see - but well worth it when it comes to endo ops, he is one of the very very very best.

Astrolady, thanks for the info. I've read about getting the shoulder pain. I don't think I'm having the dye studies as they didn't mention it to me?

Sherwils - wow 11! I'm freaking out about having my first one! I know you don't mean to alarm me but you're definitely right about being careful with regards to fertility. I saw Dr Harris at Glengarry for my gyn appt today. I forgot to ask who the surgeon would be as I was a bit overwhelmed by the whole thing. Will find out though.

Thanks so much for your replies guys.

I think the others have given you a great insight already. I have had two and one was not a nice outcome, a complication arose.

I strongly suggest you understand fully what you are consenting too and make sure they give you some handouts and make you aware of all aspects of the surgery. Contact the endo association in Victoria as they have great information on all too.

Also, you should be provided with full details of the outcome of the surgery together with photos. Make sure you understand everything that is happening at all times.


Best of luck.

I am just over my recovery from my 3rd lap, 3 weeks ago.
I get them done at KEMH by my Dr who I also see at Hollywood Fertility Clinic for my TTC.
I must admit that each one has had different recovery time, I guess because it depends on what's on the inside. My endo isn't too bad but I have alot of adhesions holding my bits & pieces in the wrong places.
I am hoping to be PG soon so I can have a break from all the endo worry of it coming back, pains, etc
My main advise is to take it easy (you don't realise how much you use your abdo muscles) and don't be afraid to use the pain meds they give you.
I'm sure you'll be right.

Lynny,

I was a bit scared having my laparoscopy. It was the first time I have had any sort of surgery at all so I was a bundle of nerves. Your doctor will come in and ask you if you have any questions so it might be best if you start thinking of what they are at the appointment before the lap. I think on the day, you are too nervous to remember and you really don't want to be thinking about much before going into surgery.

TMI WARNING: If there is something I can recommend, ask your doctor about bowel prep. Apparently it is necessary if there are lesions on the bowel that might have to be removed. I wish they had told me about this before my laparoscopy. I vaguely remember Dr Hale telling me they had to do something like that for me when I was under anaesthetic which I was less than thrilled about! I would have liked to be given the option to prepare my bowel in the privacy of my own home.

Tam is right about the abdominal muscles. I think my lower back hurt more than anything. I slept partially upright on our futon for at least three nights. I couldn't lie flat because of the pain in the shoulders due to the leftover gas from the procedure.

Kewpy mentioned handouts and photos of your surgery - I got photos of mine which was good because you can see clearly what was there and what it looked like after it was removed. The handouts the doctor gives you are from the RACOG and explain the procedure in a little detail.

As far as pain relief, Panadeine is great and there is a marvellous thing called DeGas which you can get from the supermarkets. I think it is worth its weight in gold. It is made from a safe and natural substance and is easy to take. It disperses the build up of wind in the body very quickly.

Also, the only other thing I think is worth mentioning from my perspective is that even though you will feel better quite quickly after the operation, don't be too hard on yourself if you are not ready to go back to work after the standard three days. Take as long as you need to feel better.

I hope this all helps and GOOD LUCK!!

Hi Lyn,

Don't worry, it's normal to be freaking out a little over your first op. 2 yrs ago I had a laparoscopy and hysteroscopy to have endo and polyps removed. I was so nervous about it. The nurses and doctors were so nice and took such good care of me so I was lucky. My gyno is the Gold Coast's leading IVF specialists etc so he really knew what he was doing thank goodness. I didn't have any pain in the shoulder. No nausea, except straight after the op and that was only because I ate a meal straight after I woke from the anaesthetic, so I'd suggest no food until morning.

The recovery is quick, it'll be over before you know it and you'll be so much happier after facing your fear. I was so proud of myself after my op because all the worry was over. It's never as bad as you think it will be. Good luck. O:)


Sammi

Hi Lynny,
My twin sister had the same this time last year - she went in for the procedure and was also very nervous. She said that the staff nurses etc were all very very good before they put her under and once she woke up -When she did wake up, they told her that she did have Endo, but they had got it all and it wasnt too bad. The scar they gave her was TINY and it can only be seen now when she points it out.

I won't lie to you, she was in a bit of pain when she came home and that lasted for a week or so - she just had to be really careful and gentle with herself - lots of rest.

Going into hospital is scary - I had a colonoscopy about 3 years ago, but the Drs reassure you and know what they are doing!

Good luck - fingers crossed for you.
Belinda

Just have something else to add

Everyone's recovery time is different for this operation and it also depends how much work is done. There is no standard rule that you are back on your feet in a few days or week or two.

Also, make sure you understand upfront that if they do find endo, how are they going to remove it. Ie, cutting it our or laser gun. Some people have prefence for one over the other as there is fors and againist for both of them.

Best of luck.

Hi everyone

Just wanted to come and let you know all how it went. I went in yesterday for the op and I was apparently in there for about 3 hours. When I woke up in recovery my Dr had written me a note with the pictures saying that I have severe endometriosis :(

I had to stay overnight because the Dr wanted to see me in the morning. Part of my bowel was stuck to my left ovary so they separated that and cleaned out all the endo. Dr Harris said it was quite severe. She also said that my tubes are blocked and she tried to put the dye through but it didn't go through my tubes. So the only way I'll be able to get pregnant now is through IVF :(

I was pretty shocked and cried but the nurses were very good. I honestly didn't expect that it would be so bad. I had convinced myself that they were going to tell me I'm all fine and send me home.

Today I'm a bit sore and sorry but they have given me some drugs to take and I had some pethidine when I woke up from the op. I have 3 dressings so 3 little scars I guess.

Thanks all for listening and taking the time to give me advice beforehand.

Kind regards

Lynny

Hi Lynny sorry to hear it wasn't the news that you had hoped for. :( @ your tubes being blocked as well. Will you be going down the IVF path ? if so feel free to join the girls also doing IVF

Love

Lynny - I'm so sorry for welcoming you to the severe endo party. If you have any questions don't hesitate to ask here or PM me. We can meet if you like too!

Hi Lynne, i no this is a day late being the 18th and i hope all went reaaly well for you. I have had 9 opreations for endo as i call it, i am 31 nearly 32 and have had a baby boy nearly 5mths ago, and at 21 they told me i'd never have kids, i now have a 3yr old daughter Nyah and now William, but in regards to your procedure i hope it went well. Take it easy Nadia

Hi Lynny,

I'm glad that your procedure is out of the way, but I am sorry that you've found out you have endo. It sounds like the doctor did a very good job at cleaning it up for you though. This is all good!! I know what you mean about the shock though. I think it took a few days before it hit me. I wasn't surprised that I had it ... just sad that I had had it for so long and it had gone undiagnosed.

Please feel free to email me if you would like to chat about it. There are also plenty of us in this forum who have similar experiences and would love to help out if we can.

Rest up and be good to yourself.

Love,

Melissa

Thanks girls

Feeling a bit better today but the shock is still sinking in. I guess I will be joining the IVF thread soon enough Astrolady. I'm still sort of hoping I guess that I will still be able to conceive naturally....I'm in denial I guess.

Melbo, I'm also disappointed that the doctor had said I had probably had it most of my adult life too. I keep thinking that I wish I could've done something earlier on.

But I know that I can't change anything, it's done now and I've got to look forward to the future. I'm a barrel of mixed feelings at the moment!

I am just thankful that I still do have the chance to have a baby, it doesn't matter how. And as Nadia has said, I have also had friends and family say to me they were told they couldn't have children and all of them ended up having them!

Well, thanks for listening, I've sort of babbled on a bit :oops:

Lynny
xx

Thank you for touching base and letting us know how you got on.

I am very sorry that you have been dignosed with endo. Yes it does take a while to sink in. Grab yourself some books to read up and learn about the disease if it helps or contact the association for information. You are not alone, we are all here to support you.

Take it easy on yourself recovery wise too, don't push yourself. There has been a lot of work done inside and it will take time to heal.

I am another one, my specialist thought that we would have a very hard falling pregnant and gave us fertility assistance as soon as we started to try but it didn't take us too long to fall pregnant and now we are expecting in early July.

Maybe some others can answer this question but if your tubes are blocked, how come they can't clean them out and unblock them?

Good luck Lynny and keep in touch, we are all here for you and understand what a rollercoaster endo is.

Lynny,

I hope you are one of the lucky ones who conceives soon after the operation. Apparently this is quite common so I have my fingers crossed for you!

Love,

Melissa

Thanks again...

Kewpy, I'm not sure why they couldn't clear my tubes. To be honest, it was all such a shock and I didn't even think to ask the doc why she couldn't clear my tubes. It's something I will be definitely asking her at my follow up appointment on the 18th April.

Thanks Melbo. I'm wondering if hubby and I should start trying sooner than planned as I've heard that the chances of conceiving after the lap are greater but I don't know how this goes with my tubes being blocked. We were planning to start trying later this year.

I only came about going to doctors and now being diagnosed because I couldn't put up with the painful periods anymore. So I'm thankful in a way because if I had of left it alone and we started trying and would be wondering why I was not falling pregnant, it would have put us back even further if that makes sense.

Thanks for listening.

Lyn
xoxo

Kewpy/Lyn- tubes being blocked really can be of a major delimina and depends on how they are blocked, for example small adhesions or endo tissue.

I had a lap just before falling pg with DD, so the laps help with alleviating the abdominal presure or atomical issues caused, eg when endo sticks your ovary too far away from the fallopian tubes or chocolate cysts are inhibiting the ovary function etc. "They" are now saying that the presence of endo actually changes the blood composition in the uterus so that is inhibits the embryo implanting. This is being investigated more thoroughly in the USA and they are hoping to develop an ezyme to conteract this problem.

Have you ladies heard of doing a blood test called CA125, which is actually a cancer detection test (ovarian I think) but in the lower range the results can indicate how far the endo has progressed. It's not completely actuate but my clinic won't undertake IVF with me unless the score is less than 30...

Hope everythings goin ok Lynney. I too have just recently been told that I have a 70% chance of Endo (symptoms which I've complained about before they found/operated on my pre-cancerous cervical cells in 96).

My first Gynae said 4 days off work for a lap, the 2nd gynae said only 2. Guess I'll have to organise some annual leave then, as my lap/hyster/d&c/die tests will be in 2mths time.

Few things I haven't asked though, especially since reading these posts:
* cut/laser - what are the advantages of each
* bowel prep - what does this involve
* CA125 BT - maybe I could ask to have this
* can u TTC/AIH/IVF the next cycle

Hi

I had almost a week off with my lap - i had three areas of lesions cut out - my GYN doesn't beleive lasering does the job...I have been started on clomid within three months of TTC because of no O so i am hoping that we are going to be pg soon - I was "diagnosed" with endo at a young age but they didn't do anything about it other than putting me onthe injection to help suppress it.

Good Luck lynny i have two people in my family who within the last four years had laps and fell pg within about three months - and also my mum - back in the dark ages had endo and tried with fertility drugs etc for eight years then had i guess what ever equivelent of lap is back then and fell pg within four months with my sis - then three months after the operation the next time for me....

Hi Shell... Doing well...just a bit stressed and frustrated about it all but have healed up well after the op. Had my follow up appt yesterday, I've actually just put a post up about treatment options.

Thanks AJ - I also had a week off work (plus a bit extra as it was the easter long weekend). Really needed it too. I asked the gyn yesterday about my chances of conceiving naturally with my tubes being blocked and she said while they never say never she seemed to think my chances weren't too good. So I guess we'll see how it goes and when we're ready jump into IVF (if we need to!)

Hi Shell

As for time off after a lap it really does depend on what they end up doing, how you respond to anesthetic etc etc.

I tried to go back to work 4 days after a lap earlier this month (my 12th) and I couldn't - really by pushing myself I elongated the recovery time.



* cut/laser - really depends on the type of endo they find and the surgeons' preferences (I've even had a "lining" put down to prevent the regrowth of endo)
* bowel prep - you can have a very small enema before the op (not that bad really) or do a bowel prep called fleet which begins the day before. I personally prefer the enema. But again this depends on the surgeon and the hospital and whether they expect to resect your colon etc etc
* CA125 BT - I would ask for this, my doctor uses it as a diagnostic tool - but not on its own of course
* can u TTC/AIH/IVF the next cycle- depends again on the lap results, if endo is severe then provera may be prescribed for a number of months - or you may be able to TTC straight away.

Hope this helps

Thanks Sheree.

Hi Lyn,
I know this is a late post - I wish I'd found this page earlier!
One of my tubes was blocked during my first laparoscopy in December. Yet I had a second op three weeks ago and it was clear. The doctor said to me that sometimes your tubes can seize up while they're being prodded and poked. After the first op he was going to get me to have something called a liquid ultrasound to double check.

cc

Hi ethac, thanks for the info. I spoke to my gyn last week and she said that she could try clearing my tubes by inserting a wire(?) but that I would have a higher chance of pregnancy with IVF. It's all so confusing!

But basically she said that my tubes are blocked due to the adhesions and scarring from the endo, apparently I've likely had the endo since I first started getting periods. If only I had known back then!

Since I had the lap in March my periods have been shorter, lighter and almost pain free, a dramatic change from what they used to be so fingers crossed the endo isn't coming back already.

To all of those whom have had laps. So how soon after a lap did your Dr's tell you you could start TTC again? Guess it also depends on whether something had to be removed or if it was all clear too. Thanks in advance. Still waiting, might be on 6/6 theatre list now (or a fortnight thereafter). :-)

Hi Shell, after my lap they told me no sex for 2 weeks then I could get back into if I felt ready which I was by about the 2-3 weeks.

Yep it does depend on what they do to you and how you feel. My GF had a lap on the 6th April this year (one day before mine) and fell pg because she O'd almost straight away!!!

After my first lap my gyn shut my periods down altogether by putting me on the pill minus the sugar tablets. When I'm ready to TTC I've been told to wait three months after going off the pill before trying.