What is the point in surgery? Still in pain...

[NewToEndo30]

Hi Ladies, id like your experience stories please.

I had a lap surgery in May and got diagnosed with endo stage 4. I literally have it everywhere, bladder, appendix, bowels and have adeno on my woomb.

My Dr did laser which I was happy about as at the time i did not know any alternatives.

I got the coil inserted and got put on Microgynon, 3 months on then 7 day break then 3 months again. I have just experienced my first period and boy oh boy does it hurt. I was trying to kid myself that it was not as bad as before but at times I feel the pressure and stabbing pains is worse. Is this normal? I spoke to the dr today and he said it will get better in time.

I am not sure why I was under the impression that I would have no pain after the surgery... id like to hear of your experiences. I know we are all different but i do really want to know if it will get better, or what was the point of surgery? I am feeling very lost at the moment.

Sorry for the long post, thank you x

[luthien]

Ah no

Laser is one of the three methods of treatment for endo, although it has quick recovery times it doesn't get rid of the endo completely, it just burns off the top layer so the idea is the symptoms are less, recovery is quicker but regrowth can be quicker. I had excision which my specialist said should reduce symtoms by about 50%, which it did more than that, I'm not on any hormones and it did take about 6 cycles for it to completely settle into a pattern of symptoms - pretty much just around my period. So I know with my experience I can't help much with your case, sorry.

I have written my experience of endo, diagnosis, lap, recovery, I'm not sure it answers your questions but it may help from an experience point of view.

healthunlocked.com/endometr...

For some women the endo can regrow quickly anyway, for others it's miles better, it's all different. Usually they say wait about 5 months ie approx. 5 cycles to see what your norm is, so the first few periods can be awful as you're still healing and our body can't tell the difference between endo pain and removal of endo pain.

Perhaps keep a record of your symptoms; you should have a 5 month follow up with your specialist where you can discuss how you're doing and next steps. Sorry it's not the answer you wanted.

[NewToEndo30 in reply to luthien]

Thank you so much for your reply. Sad to hear, however there is hope that it may settle down. I can't get my head arround this but i will just have to go with the flow

Thank you so much for your reply xx

[Sez73]

So sorry to hear the extent of your endo - like you, I am riddled it with and have adenomyosis like you too. I couldn't read your post and not address a few points which my or may not help:

1. I don't believe laser is adequate treatment for endo - especially at the extent you have it. Other routes should have been discussed, experienced surgeons would excise the endo. My surgeon explained it is like an iceberg - you can burn the top layer of it off (i.e. laser) but the 'roots' of it will still lie below and re-surface causing repeat problems. There are also microscopic implants of endo which can't be seen and need to be excised, laser won't tackle these sufficiently.

2. Your doctor is not correct in saying "it will get better in time" - that is absolute rubbish in my opinion and I don't feel he should not have said that to you.

3. I believe there can be a point in surgery, however, I also believe in a number of cases it will not ultimately fix the problem, sadly, no one size fits all with this illness. Some people will respond well and have no re-occurance, some will not notice much difference post surgery and some will notice a difference only to then find symptoms return. It is a very complicated disease.

4. After 15years+ undiagnosed, my first surgery (excision) gave me immediate, noticeable relief. The foggy headed-ness, back pain, period pain, shoulder pain, stomach pain, you name it, literally disappeared in an instant and although still drowsy from 5hrs in surgery I knew straight way I could feel a massive difference. The surgeon at the time said no word that endo could return, she believed she was God and had fixed all my problems! 4 months later, I started to notice the familiar dreadful symptoms and within 6 months the endo had returned with vengeance and spread. Combined with scar tissue from surgery, I felt worse. I had further very radical decision surgery 2 years later (9hr op) and took a year to properly recover from. That worked for longer and gave me nearly 2 years total respite...but guess what....it came back. And that return, along with adeno symptoms which are often hard to distinguish from normal endo symptoms, plus added nerve associated pain has left me feeling back to square one unfortunately. So, in answer to your question, yes surgery can certainly work, but in my experience, it wasn't the total fix I longed for. I have since had to learn to live with the pain and been advised no further surgery would benefit me due to the extensive scarring I have. However, don't let my story deter you from further surgery as every one is different and treated correctly, i.e. excision, may make a big difference to you.

I must say too - I have never been on any hormonal treatment as in amongst all this time, I tried to conceive and had multiple IVF which inevitably would have a big negative impact on the endo, so I'm not saying that you can't be fixed, please believe that, I would keep an open mind with surgery as I do believe it can make a big difference to people, however, everyone's case is totally different so although you get a very wide view on this forum from lots of women' experiences, everyone's will be different. Your body will do what your body plans to do, and that will be different from me, and the thousands of others on this forum.

I'm concerned your surgeon has not discussed the options open to you - is he a general gynae surgeon or an endometriosis specialist? For interest, I saw one of the world's leading surgeons, who has since retired, and saw one of the key endo surgeons in Australia and both said there was no point in lasering.

My advice would be to make a list of questions and take them to your doctor and get more answers, you have a lot of pertinent questions, all which are valid, and he needs to explain it more for you and plot a way forward. If he doesn't answer them, find a new surgeon, ideally at a BSGE accredited centre, as the severity of your endo is best placed with an expert and from what you say, I'm not sure you may be with the best surgeon for you.

All the very very best x