Very nervous about booking Laparoscopy, are they always accurate?

[Utopia56]

I have suffered with my periods when they started around age 12 but it has got worse over the years. I was taken to the doctor and put on the pill around age 13 to ease my periods as I was constantly passing out and being sick and could not put up with the pain on the first day I would come on.

I was on the pill for 8 years and was still constantly passing out and being sick. I decided to come off it as it was not helping with my symptoms and I had read it was not good to be on the pill for a long time.

Nearly two years ago I had a terrible experience. The pain was at its peak and I felt the sensation of passing out coming on, I had to lay down on the kitchen floor and the next thing I knew my whole body went stiff and I was paralysed and curled up to the point I couldn’t loosen my arms from my chest or feel any sensation in my arms and legs for at least 10 minutes. In hindsight I have put this down to shock and panic caused by the pain I was in but after that I was so determined to get to the bottom of what is going on, as I now have severe anxiety every month in the fear that the paralysis will come back. It has returned since a handful of times but it is not every month, but I always need someone with me to calm me down and not let the pain swallow me up and go into panic.

Since then I have done extensive research into what can be causing this pain and it always leads back to Endometriosis. I have been to the GP and was referred for ultrasounds and then eventually went to the gynaecologist and had an internal examination done and then done again 15 minutes later by the consultant. The consultant told me he believes I have superficial endo (Stage 1) in a place it’s very common to grow but I would need a Laparoscopy to diagnose.

I was given the options to have a Laparoscopy, trial a pill that would stop the bleeding and if the pain went away that would confirm I have endo or have a coil implant.

I did not feel like I had many options and none that I was given appealed to me, I do not like to take any medication and try to stay as natural as possible, and after being told about scar tissue problems etc with having the Laparoscopy I was very put off. I was discharged from the gynaecology dept and I used the next 8 months to research and think things through.

Last month I asked to be re referred to the gynaecologist so I can talk to them in further detail about the Laparoscopy as I feel that is the only way I am going to know for definite if I have endo. I am at a point where I am so upset and frustrated, I have actually found out more on google and forums about endo and the Laparoscopy, then I have from any doctor.

I feel it’s a drastic decision to have the op to see if I may or may not have something but I cannot put up with the pain and after reading so many of your different experiences and what your facing, I feel like it’s my only option but I am terrified to have it done.

Another main concern and a push for me to get the Laparoscopy, is fertility. Me and my fiancé are not ready to have a baby right now but it is definitely something we want in our near future, but do we leave it until that point to find out there may be a problem? What if the endo is spreading in the mean time?

I am struggling at the moment to process this all and deal with the pain but I am always trying to find new natural ways to cope.

I am so sorry for the long message but I have never fully shared my experience with anyone but my fiancé or GP on how this is affecting me/us and I do find the GP have little knowledge on Endometriosis and would rather place me on hormonal treatment before finding out if I actually have it or not.

Xx

[EndoSuckss]

It is a hard decision to make - but the gold standard of care/treatment for endo is a laparoscopy and/or excision of any endo found. If you do have endo, but you've opted not to have the lap and find out for certain, there's a good chance it will continue spreading as it'll be left untreated. This could would likely cause further problems and pain.

If you do have the lap and it doesn't find endo then at least it's ruled out and you can continue forward trying to identify the source of the pain.

Good luck, whatever you choose x

[kelsbels88]

Hi,

I u Fermat and surgery is scary but sadly it is only sure way of knowing whether you do have endometriosis.

For me personally surgery saved me.

I was in agony every month. Like you at 12/13 I was out on the pill I missed school etc the pill helped. I would get a few cramps but nothing that paracetamol wouldn’t fix. I stayed on the pill for 12 yrs. Fast forward to 2016 I stopped my pill to try for a baby after getting married. We struggled, my pain came back I had issues with bowel movements that were so bad I would pass out and get dizzy. I went to talk to the dr about my fertility because we weren’t getting pregnant and he said I would have to have the laparoscopy, they found endo all over, on my bowel my ovaries it blocked my tubes. I moved house and went to a new gynae he said I had to make a choice, (I was 31, I think 🤦🏼‍♀️) surgery or ivf. I knew how much pain my body was in and I could not have lived with putting a little embryo in there and it not have the best chance possible so I chose surgery. What we didn’t anticipate was a wolf wide pandemic which pushed my surgery nearly 2yrs.

I had the surgery, they removed my very large cyst, a Fallopian tube which was blocked and damaged, lots of endo from all over and part of my bowel that was so affected it had twisted itself and was forming an obstruction that would not have ended well for me.

So for me surgery saved me. I now have my life back and we are a month away from starting our first ivf cycle.

In all honesty I was more scared of the sedation needle than I was of the surgery itself. Also I diagnosed myself from my own research because no one else could put a finger on what it was.

Everyone has their own journey and fears and lifestyles and that’s fine but it all depends on how much you can bear, it is a rollercoaster of a disease. I hope you get to a deduction soon.

Ps… GPs do but have a clue what endo is, ask to be referred to an endo specialist and don’t have ablation or lasers as this can cause more scarring and more pain. Excision is the gold standard and best removal type for endo surgery.

Good luck any questions pls ask xx