So I’m going in for my first lap next week and wondered..
We often hear of the agonising run up to diagnosis, and then the pain and suffering that follows surgery - sometimes the above is repeated, but did anyone ever have a lap and went on to have a somewhat normal existence after?
Just thinking about how much I’m pinning on this and if it’s ever really the end of it!!!
Thanks xx
I have been thinking the same thing, I had mine two weeks ago and all I read is reoccurrence reoccurrence! Is there a chance it may not reoccur, it is mentally draining thinking about it so hopefully your feed will have some positive responses x
It is mentally draining!!
How are you feeling?
Fingers crossed there’s some good news stories somewhere for us! X
I have my good days and bad mentally. About to start taking BC soon. I had quite a lot of endo removed, recovery was slow but it was not unmanageable just needed to take it easy. I just find the Not knowing what could be most stressful x
I had mine just under three months ago and my periods have it worse. It’s terrible actually. I have my three month consultation soon as I think you have to wait 1-3 months to see if the lap has helped. For some people with addition to the coil t helps them xx
Oh god I really feel for you!
Trouble for me is most of the solutions are also contraceptives, and we are trying to start a family 😔
xx
Hey, after my lap I didn’t have much relief as my endo grew back almost instantly. I only got relief by going through temporary menopause but couldn’t cope with the side effects so had to stop. However everyone is different and you may get relief for a long long time after surgery xx
Hi, I asked this post a year and a half ago as I had the same thoughts as you. And some people wrote back saying they were fine after. Generally if you are fine, you don’t stay in the forums!! Good luck and I hope you get some if not a lot of relief.
That’s a good point! Fingers crossed x
My friend had a lap last August, she was awful pain before and now almost a year on she says she just as a few twinges.
Everyone is different and like the other comment says, when people are ok they tend to stay away from forums.
My other friends foster daughter had a lap a ew years ago and she’s gone on to have a child and is largely fine too.
My other friend (so this is 3 people I know) has a lap more than 10 years ago and doesn’t really have any issues now except heavy periods.
Good luck and hope all goes well for you - rest well and give your body the recovery time it needs.
I am now 5 months post-op and I still have pain now and then, but it's much better than it was. In relation to my terrible periods, cramps, bowel problems, hormonal issues caused by the cyst, etc, I am not sorry that I had the operation. My life is a 100times better now.
Every single person I know who has EXCISION surgery performed by an very experienced and well-trained endo surgeon went on to live pain-free life (at least for a few years).
Two things I always recommend to endo sisters undergoing their first laparoscopy:
1) DO NOT UNDERGO EXPLORATIVE SURGERY EVER. We have discussed this several times on the Nancy Nook group on Facebook. Explorative surgery is pointless. You don't need to get a diagnosis, you need someone to open you up and clear you from all endometriosis they find so that when you go home, you will feel better. Undergoing surgery (which is an invasive procedure that requires anesthesia and a recovery period) just to get a diagnosis with no removal of the disease isn't just pointless but could be severely counterproductive because the more surgeries you get, the higher the chance of developing extra adhesions. 2) ONLY LET AN EXPERIENCED ENDO EXCISION SURGEON WORKING AT A BSGE CENTRE (WITH LOW RECURRENCE RATES AND GREAT REVIEWS) OR A NANCY NOOK SURGEON OPEN YOU UP. Do not let any other surgeon touch you. This IS ABSOLUTELY PARAMOUNT (hence why I'm screaming with capital letters). You have no idea how much physical and psychological damage a badly performed surgery can cause you.
I beg you to seek only experienced and specialised help (contact me privately if you have no idea whether your surgeon is specialised or if you want names of specialised endo surgeons)
That being said, if your surgery is with a well-trained and renowned endo excision (NOT ABLATION) surgeon and it is not meant to diagnose but actually treat the disease (completely, even deep-infiltrating endometriosis or endometriosis on the bowel, urethers, diaphragm... a specialised endo surgeon can do it all!!) you will feel much much better after surgery, almost like a new woman (recovery will take at least 2 weeks though).
Best of luck!
Just a note, my specialist wasn't working at a BSGE center but does have the certification; he is one of the lead consultants of the
Endometriosis & Pelvic Pain Clinic in Cheltenham at Nuffield Health. So they can be found in various places!
You can google consultants so always check that, to see where else they work, whom with and specialist subjects including certifications. Research on who is opening you up is crucial.
I have read about it and it is a clinic that adopts a multidisciplinary approach and excision surgery, however they do diagnose endo via laparoscopy and not through clinical evaluation, so I suggest you undergo surgery only if they tell you they will excise all endometriosis if there find any and even if it's severe.
May I ask what certification you are referring to?
I've already had surgery there and really happy with the specialist! So I'm not asking for advice on that, just a different thought path. Anyways I had it done privately and he's a really good specialist, have a read of my story in my post below, perhaps it'll help give an idea of where I am in the process!!
Oh certification; you can look up specialists online to find out that, there is a
The British Society for Gynaecological Endoscopy certification which means the specialist adheres to their process and procedures, it doesn't mean they have to work at a BSGE center though, explained on their website. Any doctor can just set up their own specialist clinic privately if they so want to, so quite a few group together. Mine has published papers, attends conferences, and even does talks all round the world so is well respected. He works privately and NHS and at various centers and hospitals. As an FYI you don't have to have it done at a BSGE center; I know that's the first point of call if you're not sure about research or don't have the funding for private.
Great and good to know, thanks to explaining it to me! I am very very happy surgery was performed well on you and I hope you are doing very well now. I am sorry if I sounded rude or insisting but it's important to educate women and really make them question their doctors. I have seen it all and I am so tired of failed surgeries I just want women to understand how important choosing a specialised/certified doc is. So to update my post: either a surgeon working at a BSGE centre or certified!
hey, I was so worried about that too; just wanted it all to be normal, and there's not many after stories which are okay - it doesn't mean there aren't any good post lap experiences, it may be that we use this more for if there are any symptoms.
So, I posted a while back my experience, pre-diagnosis, pre lap, post lap, and future thoughts:
healthunlocked.com/endometr...
I guess the general things to remember is endo is ongoing, it's not cureable (at the moment), treatments are hormonal or excision via a lap. The rate of recurrence depends on each women, and symptoms + areas of regrowth are different. Some women will have one lap to remove end and that's it they can manage with hormones / pain relief. Others need repeat laps throughout their lives.
The main thing to remember is you are doing the right thing!
Points to remember: Make sure your surgeon / specialist is an endo one as they'll know where to look and what to look for. Make sure they specialise in excision - this cuts out the end and is the best proven method to reduce regrowth. Ask for your sick note before you leave hospital - it's easier than trying to get one from your GP. REST after your lap but keep your daily routine of getting up etc similar, you've been through a lot - if you need your time off "extended" talk to your specialist. Have a followup booked for two weeks or whenever just before your sick note expires as a post op check up either with your GP or specialist.
You "normal" will be unique to you; most excision surgery says expect a 50% reduction in symptoms. So after about 4 months you should have a follow up to check how things are / next steps - stuff will have settled by then to show your new "normal".
xx
Just wanted to say I read your story and it really has given me hope. 😊
Much like you I wish I had pushed from a younger age, but I was constantly dismissed by my GP for years. I’m just lucky I had a fantastic doctor in A&E a few months ago, and transferred to a GP who actually heard me for once. xx
The true answer is there’s no one answer.
Different people have different bodies, all of which act differently. But the most important part of receiving any treatment for endo it’s about managing your symptoms and that’s not just the physical either. I am 24 and have suffered with endo, looking back now for nearly 10 years. Some people have endo grow back quickly, some slowly and some won’t have any further symptoms. But as I see it you can dwell on it or you can be happy with the relief and live without worry or it hanging over you. You will always have endometriosis but it’s about maintaining treatment and life.
Hey, for me the laperoscooy recovery was fine but unfortunately I'm no better in terms of excruciating pain with endo. I've got a referral next month.
Good luck and I hope yours works out for you x
I have had a lap for adhesion and a very large cyst removal. Prior to the op I was in unbearable pain. So far so good, and I have been on forums less and less. I agree with the sentiment that if the op worked people don't go to forums and such for support.
What to expect after a laparoscopy?
Anxious 
First ever laparoscopy 
Did you experience bowel problems this long after lap? 
