Surgery one year on - a different life

[JJ2112]

I have never posted on a website before, but felt compelled to share my experience so people know that sometimes there is hope. I had laparoscopic surgery to remove widespread endometriosis back in September 2015 and it has totally changed my life. I just want people to know that it can get better (even if one day it comes back!) and to encourage them to push for a referral for diagnostic laparoscopy and not be dismissed.

I've had excruciating period pain since I was eleven - abdominal and back pain that caused me to cry my eyes out in public, making the strangest noises (like giving birth) when in the throws of cramping, vomiting, ridiculous bloating, diarrhoea and 8 days of very heavy bleeding (changing tampons every couple of hours). I'd missed at least one day of school/work every month for 20 years. I laid in bed with hot water bottles shaking, taking tramadol, mefenamic acid and paracetamol in great quantity and feeling like they didn't even touch the sides. Sometimes it felt as though I planned my life around my period - when I could and couldn't conduct an important meeting, go to an event, go out for dinner etc.

I did go to the doctors, repeatedly, for years. I was given painkillers, put on the pill and told most people get period pain and basically to toughen up. The straw that broke the camel's back was getting stuck between my bed and the bathroom, half standing, unable to move, in too much pain to even cry and just thinking "no, this is not acceptable". I'm fortunate to have good insurance through work so decided to go private and basically demanded my doctor referred me to the leading women's hospital in London. I saw a fabulous consultant who chatted to me, did an internal scan and blood test to rule out other issues and I was booked in for exploratory surgery within a few weeks. She did the surgery with 2 tiny (1cm) incisions (hidden below the knicker line) and found quite widespread endo accross my womb and pelvis. The consultant burnt it all off there an then (my husband said whole thing took about an hour and a half) and the rest, as they say, is history.

The op left me a bit fragile and weak for a week or so, but since last September I can honestly say my life has changed so dramatically for the better. I barely even notice my periods, which are now 3-4 days of very light bleeding, and, if I get a little bit of cramping (which has only happened a few of times) a couple of ibuprofen knocks it on the head.

I wish someone had diagnosed me when I was a teenager at one of my many pleading visits to the doctors and hope this post might encourage people to think about surgery as an option.

I cannot recommend the surgery highly enough. I am finally free.

[Hidden]

I felt the same. Had surgery on June 10, two months out I feel free, just as you two. I will keep praying for both of us.

[dbelle]

That's amazing! I had surgery in March and I have just started to see an improvement in my periods. How long did yours take to improve? We're trying to conceive after two years of trying so I am hoping this op has helped us.

[JJ2112 in reply to dbelle]

Hi dbelle

Probably about 3 - 4 months for me. First period I saw little improvement and I was worried it hadn't worked. I was on the pill from Oct to Dec and saw some improvement over that time, but after I came off the pill at Christmas (it was causing dramatic mood swings and low libido and just isn't for me) things really changed for me. By January I finally had a "normal", pain free 29 day cycle.

[brumchica]

I tried to post a really long reply here, but was for some reason told I couldn't put it up. But to cut a long story short, I want to say that I can't thank you enough for this post. I have been suffering similarly for the last 18 years and am due for a consultation regarding a laparoscopy next month. After reading your positive post I have allowed myself to contemplate a time when I could have a 'normal' period, not having to plan my life around the agony it will cause. Thank you for sharing. I have hope and I'm going to hold onto it xx

[JJ2112 in reply to brumchica]

Good luck! I hope it goes really well.

[Hidden]

Thank you for sharing your experience. I have been putting off surgery since my diagnosis, scared that things will actually be worse than they are now. I've had pain for 25 years and it's just become part of my normal life. But I am seeing a new consultant in ten days time and I'm starting to feel excited about what may happen! Thank you again, I'm so pleased for you. X

[brizzlebird]

Thank you for posting this. I am so glad to hear your positive story. Long may your wellness continue! X

[Simo7]

Fantastic to hear that you're life is on course again. Stay happy & healthy and thank you for offering hope xxx

[Hanny101]

Thank you so much I am lying in bed after my first lap yesterday and this has given me hope that I did the right thing. I too have been fobbed off and called a hypochondriac and that its just and periods until I actually went in during my period and repeatedly until i got a referral for gynecology. They found endo on my ovaries and uterovesical fold and I was told they used diathermy on those areas. I am in a lot of pain right now but you have made me feel so much better xx

[Kayleycraigxo]

I got a lap five weeks ago now in even more pain! My joints are so sore my wrists and legs I can hardly move stomach pain. I started my pill day I came home from surgery hoping might be the pill so wondering if I should come off it got a gyno appointment next Friday with the guy that done it never had this pain before my surgery so I am very worried