Hi I'm new to all this and I've just discovered you wonderful people, I'm a complicated case so any advice would be marvellous!

Hi I'm a 30 year old mother of 1.

When I was younger I had severely heavy, painful periods and would have to take 2 days a month off school. I was then put on a pill which made things easier. I suffered a migraine with aura and because I have a heart condition, the doctors said my stroke risk was too great and therefore I was no longer allowed oral contraception.

Since then I've been on the depo provera, which I do not bleed on at all! It's magical! However the dull ache remained. I fell pregnant and had a beautiful baby girl but since having her 2 years ago the pain has become unbearable.

I was diagnosed with moderate endometriosis back in Feb this year. I had a Laparoscopy and they lasered what was there. It was mainly in my pouch of douglas (yes I did roar with laughter when my consultant explained) and my left ovarian fossa (space around my left ovary).

At my follow up it was suggested that I had a coil fitted as this would ease the symptoms of the endometriosis. I did and my body rejected it. I went back on the injection but since Feb the pain is getting worse, it's like a constant period ache and I feel like any second I'm going to pour with blood! I am on zapain (30/500mg codeine/paracetamol) for pain relief.

I'm really looking to see if anyone is in a similar boat? Still in pain even though I had laser surgery only 4 months ago. Could it be they missed some, does it return that quick? Also what are peoples feelings re: pain relief because the zapain just isn't cutting it!

Sorry for the long winded story just thought it would be easier with the facts x

6 Replies

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  • Hi - your story sounds quite typical of a girl having what were clearly abnormal periods from a young age that were treated with hormone medication. This can help a lot but unfortunately when endo is the cause it can still slowly progress and reveal itself later on. The most common areas for endo are the ovaries and tubes followed by the Pouch of Douglas with other areas often becoming involved.

    I would imagine that you have also been typically seen in general gynaecology and that laser has been used to 'ablate' your endo. This means burning which can be successful for very minimal endo but for anything deeper it will just burn the surface leaving endo behind to continue growing. I think this is probably what has happened.

    Click on my name and read my first post and the one on POD endo to see what you identify with and the one on finding a specialist. I should request a referral to a centre for more thorough 'excision' treatment to remove the endo fully. x

  • That's great Lindle, thank you. I am a healthcare professional but this is definitely not my area of expertise haha! What I'm finding difficult is the fact that unlike the conditions I deal with day to day, endometriosis is just not straight forward like:

    This is what causes it

    This is diagnosis

    This is treatment

    Where it's still in the realm of the unknown, it's quite frustrating.

    Thanks again and I'll take a look at your posts x

  • Hi - there is quite a lot known now and certainly with regard to treatment but for reasons that are unclear doctors and many general gynaecologists still seem to be resistant to what progress has been made. x

  • Hi there, I'm 32, no kids, was diagnosed at 22. I too suffer pain every day. I've had five surgeries - my endo is always only mild to moderate at worst but the pain is severe. The longest I've ever had from a lap is six months, some laps I've had no relief at all. If you are someone who gets a lot of pain from a small amount of endo, as soon as it starts to return, the pain can come back.

    It's very possible that they didn't get it all, it's very hard to remove it all, especially if you're like me and you have lots is very small deposits that look more like blisters than they typical presentation of black or red lesions. Your absolute best bet is to find a really good Endo specialist surgeon who can do excision surgery - this is where they cut the deposits out rather than burn them away. I am a patient at the John Radcliffe in oxford despite living in Bournemouth because they are so good - you can be referred there from anywhere in the country, as long as you can get there it's worth it. Two of my surgeries were done there and they were by far the most effective - the first didn't find much as I was still on Depo at the time which was suppressing it so they mainly just removed the few spots they could find and all the adhesions. A few months after the lap my periods returned and the pain returned immediately. They did another lap around six months later and the endo was far more widespread. After that I had a lot of improvement for about 6 months then things gradually worsened.

    Over the years with all the research I've done, I believe that the following route is the most effective: have an excision lap by a specialist whilst on no hormonal treatment and having had at least a few unregulated cycles / periods before the op (this means they can see and remove as much as possible), then immediately go on to a hormonal treatment which either totally stops periods or means you have as few as possible, so it has less of a chance to spread. I've been off all hormones since late 2013 as my hormones were screwed up after nearly twenty years of constantly taking something. I'm waiting for another lap, in the next few months, and after that I'll be trying to get pregnant as soon as possible (fingers crossed).

    You might want to consider a hormone treatment like zoladex which puts you into the menopause temporarily. It's licensed for six months use but it helped me so much my specialist agreed to me using it for longer. In the end I was on it for two years which caused me some problems which lasted years afterwards, but if I'd only had it for six months I don't think that would have happened.

    So basically, get as much disease cut away as possible and then immediately limit how many periods you have and their severity. However, you may find that some of your pain is not related to the endo at all but is caused by nerve damage after years of sending pain signals all the time. This is a huge factor for me, my pain was untreated for so long and now my nerves send pain signals even when they're not stimulated, and when they are the pain levels are insane. This is a common problem and there are specific meds for neuropathic pain that can help. You could ask your GP to refer you to a pain specialist but they can be hit or miss - personally I'd get a a referral to an endo specialist first and then ask them to recommend a good pelvic pain specialist.

  • Hi cupcakegirl! Thank you so much, this is like reading my own feelings! I'm in Basingstoke so the John Radcliffe would be fine for me to travel to. The good thing is I have zero bleeding because of the depo, it's just the pain that is unbearable and really debilitating.

    I will most definitely see if I can get a referral to a specialist endo clinic. Sounds like the best plan. My gynae specialists have been fantastic but I just didn't expect to return this quick!

    Thanks so much for your comment, it's made me feel so much better. And good luck with the baby making :) xxx

  • Thank you. Definitely ask for a referral to the JR - I've been treated at a few places over the years including the endo clinic at UCLH in London but I've had the best treatment at the JR.

    Hang in there - there are still lots of things to try. I know it's hard, it took me ten years and two laps before I got diagnosed, and I had to stop working four years ago so I completely understand. Things can get better though. Xx

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