4 months after treatment lap for Endo and in agony again!

[Cloudyrain]

I think the topic title says it all!

I had a treatment lap for Endo in October 2011 and my first period 2 weeks after the lap was horrific and agonising. My consultant said it would be because everything was still very raw from the treatment as the endo was very extensive and very active so everything in my pelvic area would be still very tender.

Since October I haven't had a period and am now on day 86 of my cycle. For the last week I have been getting cramps and pain radiating through my legs, and rock hard boobs, but it's been not too bad. This morning I have been on agony on the floor with the pain, so bad I thought I was going to pass out - I was that hot I ended up on the back yard in a vest top and my pj bottoms just to cool down: whilst scaring the cats with my crying!

I just feel so fed up. I thought I would get more relief from the op than this - surely it can't come back this quickly! It really is ruining my life and there doesn't seem to be anything I can do about it xxx

[Hols969]

I would go back to the GP as that doesnt sound right at all, you shouldnt be in such pain, I dont know much about endo so perhaps one of the other ladies who has had it done can help further. I would have thought 4 months on you would have pretty much healed tho. Did they make any comments after the op, in how successful it was etc?

[kate s]

Holly is right, you really should go back to your gp as no-one should be in that much pain especially after treatment. Sorry you are feeling so rubbish hun. Sending you lots of hugs. xx

[Cloudyrain]

Ah thanks ladies! I need it, feeling quite fed up!

My consultant told me from the off that laps work as treatment in 50% of cases. I think in a weird way it's fortunate for me that I have pcos too as at least I'm not like this every month! ironic really!

I was told at my follow up if I get the symptoms coming back I will have to go and see him again, but that the next option will probably be a "false" menopause - and I really don't like the sound of that! But I suppose it has to be better than this pain. It's subsided a bit for the moment, but I feel like I'm on a tightrope and it's only a matter of time before I fall off.

Grrr, I hate my body! Xxx

[Meringoo]

Hi,

I didn't get any relief from my laparoscopy and diathermy either. The "false menopause" you mention I am guessing you mean treatment with injections like Zoladex of Decapeptyl? GNRH analogues? I recommend that course of treatment, even though the side effects aren't well tolerated, I actually found that I got roughly a year or relief after 2-3 months' of treatment. Best help I've ever received from a gynaecologist.

I am currently going through a dreadful flare up, so I know what it's like. xx

[Cloudyrain]

Thanks hon, it's pants isn't it - I'm going to call my consultants secretary today (when the rest of the world is awake!), but I suspect I will need to go back to my GP for a referral. I think it was zolodex that was suggested - I originally refused and chose the lap as I stupidly thought that the lap might be good for a couple of years at least, just to get married and go through fertility. The idea of menopause symptoms doesn't exactly appeal, but right now anything is better than this!xxx

[Meringoo]

It is rubbish. I am really struggling right now.

To be honest, I could deal with the hot flashes, it was the weakness and achey joints that was the problem when I was on Decapeptyl. However, it did give me decent relief afterwards. Ideally you should only be on it once, and for 6months max, hhowever, some women are on it long-term, and take oestrogen HRT to reduce the effect it has on bone density. It's never simple, eh?

If Zoladex or the like is offered, I would go for it xx

[Cloudyrain]

Thanks hon!

I sometimes use an Endo board and a lot of the women on there are offered Lupron Depot (they are in the US) and there have been massive lawsuits over there about women who haven't ever come out of the menopause - it just made me paranoid. I'm going to call today and see how soon I can get an appointment as I have had enough now, and it's only been at the really horrific stage for 2 days (normally lasts 4-7 at it's worst).

Hope you feel better soon xxx

[Cloudyrain]

Just a quick update: I have, by some miracle, been able to get an appointment with my Consultant tomorrow even though he had previously discharged me - he is seeing me on his own dime!

I will let you know how I get on, but have a sneaky suspicion that I'm going to go with your advice Meringoo, and enter the wonderful world of the menopause (for a short while!) x

[Meringoo]

I think Lupron may be a little different, but you are understandably cautious. I was too.

Great news with the appointment! Good luck! Let us know!

P.S. where in the east mids are you based? I am in Nottingham. Just got referred to gynae today as was ill all weekend with endo trouble. Was discharged in 2010 after my decapeptyl course had settled and showed good results. Unfortunately I try to grin and bear stuff for too long. I have been gradually getting more and more endo trouble since about May last year, and now I know that I need to go back to hospital. We'll see...hope I get a quick appointment!!! xx

[Cloudyrain]

I'm on the Notts/Derby/Leicester border but took my referral with Mr Vindla at the Woodthorpe through the NHS. It's a nice hospital, shorter waiting times, and a better staff/patient ratio than the QMC. I have to say when I went in for my lap the staff were brilliant, And I might just kiss Vindla when I see him for seeing me!

You should come to the East Midlands meet - we are having the next one two weeks on Sunday at 3pm at the Nottingham Knight Island Pub!

Have they said you can do your referral through choose and book? There are quite a big selection in Nottingham/Derbyshire and I think my appointment with Mr V was less than 4 weeks from when I booked it - I can't remember exactly, but I know i was shocked and pleased, and then he got me in for my lap as soon as I got back of my hols about 4 weeks after my appointment.

Hope you get something sorted soon xxx

[Meringoo]

Ahhh right! I see. Thanks for the invite, I will if I can!

I've done the choose & book thing in the past for another illness, but at the moment, I think I have to wait for an appointment. I have a feeling I will either be offered GNRH injections, a lap or (most likely) the Mirena IUS. It's quite frustrating. Also, there is absolutely no way I can have a Mirena inserted without being given anaesthetic, because when I had a regular IUD fitted, I felt like I was being murdered!!! Possibly due to the doctor fitting it, but it seriously scares me. I can handle taking pills, but I will insist on being asleep when/if they give me the Mirena!!!

A friend of mine has endo and was undergoing a laparoscopy and treatment, and had her Mirena fitted there and then, and a couple of years later she says it was the best thing she has ever had for endo. She has, however developed a large ovarian cyst (one of the risks with the Mirena) for which she now needs surgery again, but at least she isn't suffering with endo pain.

xx

[Cloudyrain]

It was as we suspected - Prostap and HRT. I just hope theyvget the hrt right first time!x

[Meringoo]

See if you can manage without the HRT (oestrogen) for a while to maximise the effects of the Prostap. My consultant and GP refused it as they didn't want me to get the oestrogen-related pain, though my aching joints may have disagreed with that decision!! Glad you are being given a proper treatment!! xx

[Cloudyrain]

The thought of menopause without hrt sends me to the sherry bottle! I don't know if I'm that brave!

Thanks for suggesting it though honey, I will talk to my GP and get her to prescribe me hrt, but I will only start using it if I have too.

I hope you're in less pain today; I thought mine was improving yesterday only for it to come back with vengeance in the night. It looks like another sick day to add to my very long list!xxx