I had already posted here as awillems but had to use a different email. Today I had my lap to see if I have endo. My worst possible scenario came true - nothing was found, no endo. I feel I am back at the beginning - no answers for my pain. I really thought something would be found, since I am using medication for over a year which helped to reduce the pain a lot. Why would the medication help, if it isn't endo???? Before the lap I at least had a possible explanation for my pain, now I feel I have nothing...... the pain isn't bad at all. The pain I had to have the lap on the first place was a lot worse. Emotionally I just feel totally lost right now. What should I do from here? Could the info be missed? Can it be something else that works with the same medication?
Lap today and feel totally lost. - Endometriosis UK
Lap today and feel totally lost.
Nothing was found is not the same as not having endo. it simply means they did not see it. and seeing as you were on drugs for such a long time to stop the endo being active, no wonder they didn't see it. It is very hard to spot endo when it is not actively bleeding, which is why we say that the best time to have an op is when you are on your period or very soon after a period.
That way any small lesions of endo are active and bleeding and show up much more clearly to the surgeon. You could still have endo, especially as the meds you were taking to control the endo side effects were effective.
You need to discuss with the surgeon when you see him next, what your plans are for the next couple of years. Do you want to remain on menstrual control drugs, pain killers or try for a pregnancy, or if you have completed your family or are not intending to have kids, then perhaps endometrial ablation or maybe an MRI scan to check for adenomyosis which is similar to endo but will be hidden in the muscle walls of the uterus and not always visible to a surgeon.
There is a lot still to follow up on. This was one step in a long unsteady stroll through life.
First priority is to concentrate on recovery from the op and get fighting fit again.
Keep regularly active pottering around the house even if it hurts (you have been stabbed a few times and poked and prodded too) You will still have a lot of gas in your tummy which in the coming hours will inevitably makes it's way up to the shoulder blades and hurt.
So keeping moving as much as poss will get that gas shifted alot quicker and you'll feel so much better once it has gone. Fart and Belch it out as and when you need to.
It will be like yo have drunk 4 two litre bottles of fizzy pop and that gas is trapped in your body. Trapped gas hurts anyway, even small amounts, so get rid as soon as you can by whatever means you can.
Get plenty of rest and sleep between your short bouts of walking round the house.
The general anaesthetic will have knocked you for six and it does take several days to get over that aspect alone. This is not the time for stressing yourself out, it is recovery time.
Look after your body, it's been through an ordeal.
Save up a list of questions to put to your gynae for the next meeting. He/She might have some ideas for the next stage of investigations anyway.
Get Well Soon
Thank you for your kind words. I really needed this I did have the paid in my shoulders from the gas, but luckily that did not last very long. I also hhad the impression the lap didn,t take long eeither. Around 12.00 I was taken to the pre-op area and around 13.00 I was already awake and at the recovering area. Us it normally this short? Friday I have an appointment with my general doctor. Hopefully he will have the notes from the hospital. On the 19th of June my follow-up with the gynae is planned. Due to the medication I have hardly any bleedings. My last bleeding long enough to call a real period was about a year ago. I will get my questions ready for the appointment. Hopefully she is willing to search further. Can't really go without further without answers.
Hi - I wish you well for your recovery from op. Rest up. Can I ask what meds you were on prior to the op as some drugs can temporarily shrink endo and therefore would not be so visible until coming off the drugs and giving it time to regenerate. Just a thought.
The day after my lap: didn't get much sleep. Too many emotions. Beginning 2012 I started with lucrin injections (I think in the UK it is like zoladex).I had them for 6 months and I felt great. After the start up I had no pain at all. Only with the last 3 I had a period. In July 2012 I had to switch to provera due to possible side effects. It wasn't as good as with the injections, but still a whole lot better than without medication or with the regular pill. So for about 1,5 year I have been taken the medication. Also when the lap was done. When I started the medication it was in a previous hospital. The gynae suspected endo, but didn't want to suggest a lap. The medication was advised as a trial to see if it would reduce the pain. Only when I switched to prover a and some of the complaints came back (even though less pain than without medication ) I was advised to see my current gynae who is supposed to be specialised in endo, I received the option for a lap.
I just keep coming back here, because I don't know who else to talk about this. Now nothing was found NY mother says at least you know there is nothing bad......I feel I have no answers at all and just back at the beginning of it all. It feels like I lost my chance of a diagnosis. This was the 3rd hospital and she is supposed to be the endo-specialist. Now that nothing is found, I don't know what to do next. The pain from the lap wasn't that bad, compared to the pain I had before. What steps can I still take...if it was missed because of the medication...they won' t suggest to do another lap again later....
I feel for you.
The problem we all have is that there are those who say they treat endo and then there are the 'real endo experts' . . but who are like the holy grail to get to see. My first gynae, who was private, advertised as treating endo so I thought I would be in good hands. Turned out endo was just a string to her bow and she was not in fact a specialist endo surgeon and not experienced in difficult excision cases like mine.. What annoyed me most was that she was going to try and treat me by recommending a hysterectomy when I was riddled with endo elsewhere and it would not have been sufficient without excision of all of that also, and she did not even mention to me about excision surgery, I had to find out about that myself, and was clearly not going to refer me onwards but treat me within her capacity.
Although I myself had not been on these drugs, the second consultant I saw (I asked for a referral) was an specialist endo consultant surgeon and we had conversations about endo and about treatment and he said you cant get the best visual results from an investigatory lap where a patient had been on these drugs until the passage of at least 6 months so that the full extent of endo could be ascertained. Although he undertakes total peritoneal radical excision which removes the whole abdominal lining, thus removing seen and unseen endo, most undertake patch excision and so remove patches that they can physically see which makes that less easy to do when the endo has been temporarily shrunk.
If you can look into your surgeon's background, check them out. It might be worth raising this issue with your consultant when you have a follow-up but if, they are an endo expert, maybe they know better re your own case and this is not correct in your case.
Nevertheless, if you are still experiencing pain, they need to get to the bottom of what is causing it.
I sooo wish you well and it is really tough going through this but you are not alone in this and we are all here to support each other.
Thank you for your reply. It is just great to have this place to be able to get your emotions out. My gynae is mentioned as endo specialist by the Dutch endometriosis site, so I expected to be at the right place for this. But I will ask at my follow up with regard to the medication.
Need a lap but feel nervous
Lap three weeks ago, consultant today......
First lap :-)
Lap next week
