Don't know what to do....

[charlotteps]

I was diagnosed with endo about a year ago. The pain has always been bad on my periods but always put it down to 'painful periods'. Then the pain was excruciating, couldn't sleep, couldn't go to the toilet, even codeine didn't help. So after having to be so persistent with my doctor who was putting it down to 'painful periods' I knew something wasn't right so I went to see a consultant through bupa. After many scans and discussions, I was diagnosed with endo. From then I was given a few options from my consultant, which were different forms of contraception. I came off of contracpetion a good few years ago when they found out that my mums cancer was hormone related. I am now on progesterone and I take 2 a day as 1 a day didn't stop the bleeding. I have horrible side effects such as bloating, pains, bleeding/spotting most of the time, loss of sex drive and wait gain. I don't want to be on any hormones any more but I can't live with the pain. Is my only choice the operation?

I am also 25 and really broody, I would like to have children soon but am so scared that I am 1. infertile and 2. will have to cope with the endo pain for 9 months as well as usual pregnancy stuff!

Feeling really frustrated as I am paying to see a private consultant and all she seems to be offering me is different forms of hormone pills and I feel like I shouldn't be on any hormones as I have a higher risk of breast cancer...

Any advice?

Thanks

[Vickal]

If the operation you are being offered is a laparoscopy it’s really not that bad. Depending on what is found and what can be lazared away depends on how your recovery will go. I was back at work after a week, but I was still sore for another week or so. Although I didn’t have much lazaring done. If you make it clear to your consultant that you would like to try to conceive they will need to reconsider your treatment.

Endo does not mean that you defiantly cannot get pregnant as every case is different it depends entirely on where the endo is. Could they tell you where the endo is from your scans? A laparoscopy will show this and if it may or may not compromise your fertility. Either way once you know where it is you will have a better idea on your options.

Also I’m no expert but I don’t think you should get your endo symptoms through your pregnancy.

Hope this helps x

[charlotteps in reply to Vickal]

Thank you, yes I was referring to the laporoscopy, and you have made me feel a lot better about it! It seems as if this is the last thing my consultant wants to try with me, but now I feel as if it is my only choice. They couldn't see any endo in my scans, but the pain is so severe, which I don't quite get. Could they see where your endo was in the scans?

[Vickal in reply to charlotteps]

I had an internal ultra sound which showed two cysts on my right ovary. Luckily my GP new that further investigation was required and was happy to refer me to a gyne. He then did an internal examination and said my uterus was 'mobile' (which was a good sign) but neither of these tests diagnosed endo but I’ve been told that they often can’t tell from this. Unfortunately I’ve read again and again on this site that many ladies don’t get any further as some GP’s don’t seem to realise that endo can often not be seen on scans.

My lap showed a very different picture - my uterus is stuck to my bladder, my right ovary is stuck to my appendix and 90% covered in endo. They also found smaller patches elsewhere too. My gyne told me that he couldn’t lazar my bladder as it risked damaging it or my uterus (although I’ve since learnt that other ladies have had this done by endo specialists). Now I’m trying to get pregnant as my gyne told me that the disease will spread and may hinder my chances of a natural conception.

I was very nervous before my lap as I’d never had an operation but it really wasn’t that bad. Don’t let the doctor you’ve got dictate the treatment you get it’s your body and if you don’t want to be on hormones then ask to discuss other options.

I was told my endo was mild to moderate but the pain doesn't feel mild or moderate!! I can't imagen what some ladies must be going through. xx

[charlotteps in reply to Vickal]

Wow seems like you have a difficult situation too. Good luck with trying for a baby, I was told that the endo can potentially go when you are pregnant and after you give birth which has also made me want to start trying (despite being broody already). I had my consultation yesterday and she basically said my only option left is the mirena coil..so I will try this, which may be another 6 months of bleeding and irregularity, but I don't have any choice-very frustrating. I would rather this than an operation though, lets just hope it does the trick! The other symptoms I get from hormones I guess I have to live with-also very frustrating but hey!

Does anybody have any experience of trying the mirena coil? I'd really like to know if it was painful during and after the insertion too...

Thanks,

Charlotte

[ap2014 in reply to Vickal]

The pain with endo doesn't always correlate (weirdly) with the severity of it. I've had severe endo (diagnosed in 2003 so who knows how long I'd had it) and I've only had bad pain when I've had endometriomas on my ovaries. A colleague has mild endo and she has one day a month of excruciating pain. Another lady I know has moderate endo and is in bad pain all the time. What matters is how it makes you feel, not what 'level' of endo you have - I wish ALL doctors knew that.

[charlotteps in reply to ap2014]

Yes it is really frustrating I have had such low moments due to the lack of care, knowledge and understanding the doctors have, I was sent to A & E as they didn't know what to do with me, my stomach was swollen and I was crying in agony. I'm happy to not be in pain anymore but so sick of trying out all kinds of treatments and so sick of hormones messing my body around-meh