Feel lost - need advice on treatment given that pain is back less than two years after laparoscopy. How many laps is 'normal'?

[gdfzhkgukl]

I am 39 and was diagnosed with endometriosis in 2017. After years of telling doctors my period pains matched the symptoms for endo but being told it couldn't be, I finally was ill enough to find a surgeon privately. He was so certain I had endo that he didn't do a diagnostic laparoscopy and went straight to remove the endometriosis (and an ovarian cyst).

For the first year after surgery things were much better, although my periods have been heavier they were less painful than before the surgery and my fatigue and back pain were gone. Now I am experiencing heavy periods, bad period pains, pain during sex and I am having pelvic pain at other times of the month as well.

I recently moved so found a new endometriosis specialist. At my last check up he told my one of my ovaries is stuck to my uterus. He very strongly suggested I avoid further surgery by taking Orilissa (Elagolix) but wanted to speak with my husband since he would have to live with me/the symptoms. Since I had a very negative experience with the pill and with Mirena I am very reluctant to go that route.

Meanwhile my symptoms are bad again and I wonder if my endometriosis is back so soon or maybe I could have endo and adenomyosis? I am also wondering if those who have had multiple laps and/or hysterectomy have any suggestions as to what I should do next? Would you have a second lap before trying anything further?

Generally I feel a bit lost as to what I should consider next (apart from a doctor who listens). My feeling is I may as well have a hysterectomy and have my ovaries removed if I am going to experience menopause, but maybe it isn't as simple as that or that is too drastic at this stage? I don't have children but my husband and I chose not to, so I am not against a having a hysterectomy at some point if I could live without pain.

My older sister is menopausal and planning to have an oophorectomy next year. She seems to think I should also expect to do that because of a family history of breast and ovarian cancers (we are negative for BRCA1 and BRCA2 but an NHS genetic counsellor convinced her our risk is high enough to warrant surgery as prevention).

Sorry for the long post and thanks for any and all advice.

[Catness]

Hey,

Sorry to hear things are hard right now

I’ve just had my 6th laparoscopy and it will be my last unless things go very pear shaped as all these surgeries aren’t good for my body. I’ve taken to trying to manage symptoms alternatively through diet, yoga, massage, herbs, osteopathy, a good women’s physio therapist and I’m going to try acupuncture too. I’ve got stage 4 endo and adenomyosis and interstitial cystitis too.

There is a great account on Instagram called ‘New York endometriosis’ which has a wealth of information on concerning treatments and surgeries. This includes a post on Lupron - orlissa is just another name - and the dangers of this chemotherapy drug. I strongly recommend you stay away from this as the side effects can be devastating and last a long time after the treatment. There is also a group on Facebook called ‘Nancy’s Nook’ which is for endo warriors and you will find some information on there about the drug also. Xxxxx

[gdfzhkgukl in reply to Catness]

Thanks so much for these recommendations Catness, I will check them out and research my options further. The drug looks awful so I will steer clear. I do feel hopeful when I read that surgery can clear endo for good. I hope your surgery goes well and is your last xxx

[SafiaD]

I'm So sorry to hear that! May I ask yo this? If you could find another solution that will relieve your pain, would you still take the hysterectomy? If the answer is no, then you have your answer to weither or not having a hysterectomy. Hang in there, there is always better solutions!