Confused : (

[Jade01]

For 18 months now I have been in pretty much constant pain. It's been so bad I can't walk properly, bend over or even move. Back and forth to the doctors/hospital and seeing different gynocoligists all the time but they wouldn't do anything!

I then had Cin3 pre-cancerous cells removed - this didn't show up on my first ever screening test the week before but after a colcoscopy.

Then a few months later I saw one of the top gynos and he was so rude and tried making out the pain was all in my head! I stood strong and demanded a laparoscopy which he finally agreed to (I think just to shut me up)

On the day of the op he came round didn't say hello to myself or my partner and just said right we probably won't find any endo today so... Bla bla. I had no confidence in him and quite frankly didn't want him anywhere near me at all!

Woke up after not in too much pain and a Doctor came to see me (not the main rude surgeon) he started to explain they found a small amount of endo on my left ovary and had some pics to show me. I was so out of it though he said he would come back later and go through it all with me.

2 hours later and I was in so much pain. Asked to see the main man (yes the rude one) He refused TWICE to come up saying now they had removed the endo there was nothing wrong with me! Nurse who discharged me was awful, she didn't know if my stitches were dissolvable and finally said she guessed they were. No proper aftercare info or anything.

I am absolutely beyond furious at the treatment I received. My pain has always been on my right side going down to the top of my leg and towards my back. So don't know why they only found a 'small' amount on the left side???!!! Has anyone had this before?

I phoned my Dr really angry and he just said to carry on taking the pill and see how that works. This isn't going to stop all the pain though is it?

I have demand to have another lap with a gyno that i looked up and researched and he reluctantly agreed. I am going to pay for a private consultation rather than wait 3 months or so and then go back to NHS to have further treatment (hopefully anyway)

I'm just so unhappy, for the last year I haven't been able to lie on my right side at all and can't have sex with my partner as its too painful. This is not normal and I just don't think I'm being taking seriously. I have had so much time off work and going to end up losing my job very soon.

It's just ridiculous how everyone with endo or suspected endo are treated!

I can't go on living my life like this and without proper support. : (

2 weeks after my laparoscopy now still the same pains on my right side and now my left side hurts too!

Does anyone have any advise or experienced anything similar to any of the above?

Xx

[dabba76]

Your treatment has been awful. It makes me angry hearing ladies are being told the pain is all in your head!!!

I was diagnosed with minimal endo in 2011 after 2 years of terrible pain. In 2015 I had another lap and was diagnosed with widespread endo with bowel adhesions. I can tell you my pain was worse with minimal endo and others will say the same.

[Jade01 in reply to dabba76]

Thanks for you reply. I know it's so frustrating! I almost started doubting myself but thought no way would I be in this much pain otherwise.

Did they diagnose you with minimal endo from doing a laparoscopy?

Really? I didn't know that, I guess I just assumed the more you had then generally the worse it would be.

Have they removed anything then?

[dabba76 in reply to Jade01]

Yes I was diagnosed with minimal endo during a lap in 2011, it was lasered and I didn't really have any relief from the surgery. In 2015 the endo was excised, fallopian tube removed, d&c and nova sure done. Nothing was done with the bowel adhesions.

Pain does not correlate to stage of endo. Some can have severe/stage 4 endo and not be in pain at all. x

[Jade01]

Ah I see. Gosh you had a lot done. So did you have to wait for 4 years in the same amount of pain for your second lap?!

How are you now?

X

[dabba76 in reply to Jade01]

The pain wasn't as bad after the 1st lap, it was different.  It was all the other symptoms that I was struggling to deal with that was worse.  I'm better now pain wise after the nova sure drastically reducing my periods, I have also cut out loads of stuff from my diet due to intolerances and stopped drinking alcohol.  I now work part time and don't put myself under too much pressure, I rest (a lot) due to terrible fatigue x

[Jade01 in reply to dabba76]

Oh lovely I don't blame you for only working part time. I work in retail and being on my feet all day in constant pain is awful. (Well the times that I do manage to go in) 

Sorry but what is nova? 

X

[dabba76 in reply to Jade01]

I don't know how u do it. I couldn't I would be even more of a wreck than I am now. 

Nova sure is endometrial ablation where they microwave ur uterus to remove the lining so no egg can  survive. It should stop ur periods although I still have a tiny 1 or 2 day bleed.  It's obviously only if u don't want children. It has been a God send to me as my periods were hell. 

X

[Jade01 in reply to dabba76]

That's good then, do you still find you get a lot of pain though? 

I really wouldn't want to have that done yet though : ( 

Xx

[dabba76 in reply to Jade01]

Not every day it's bad during ovulation & period time or if I'm constipated. I have to b very careful with my diet. I get bad sciatic pain & groin pain. It's the fatigue that's the worst thing for me. I don't sleep well due to restless leg either. I'm just trying to learn to cope with it all x

[Jade01 in reply to dabba76]

God it's a lot to cope with isn't it. My pain is mainly in my lower abdomen but if I walk anymore than 10mins it goes down into my leg and back. 

Do you take any painkillers? I have tried everything them become immune to it with in a matter of weeks. 

Still taking liquid morphine and the patches at the moment. Without a doubt helps but then turns me into a zombie and major breathing problems at night. : / 

Have you tried using Epsom salts in the bath mixed with a bit of geranium essti oil for restless legs? Or I find Biofreeze spray helps. I used to have a deep tissue massage once a month too which worked wonders. It is so bloody annoying isn't it! 

This last year has been the worst of my life, I really can't imagine living like this for the rest of it. : /

Xx

[dabba76 in reply to Jade01]

Sorry was ill all weekend with a migraine

I took tablets all day every day from 2009 to 2011 and it didn't really help so now I only ever take tablets when it's really bad.  I now use heat, breathing exercises and ibuprofen cream when in pain.

I haven't tried Epsom salts but think I will give it a try.  I tried magnesium spray which helped a little.  I like the sound of the massages will look in to that.

I went through a horrific period mentally.  I went to counselling for 3 months and it really helped.

Did you do anything about getting a private consultation? x

[Tboag]

Sorry to hear off the way you where treated, try to get regfered to a endo specialist at a bsge, if your not already, good luck x

[Jade01 in reply to Tboag]

Hi, thank you for the advice.

I was treated by a top gyno surgeon who specialises in fertility and endo and general things in that area. 

I strongly feel he didn't take me seriously though! 

What's bsge? Sorry for my lack of knowledge I'm quite new to all this : ( 

[Tboag in reply to Jade01]

Bsge centres are where specialists endo surgeon s work from, they have to complete a further 2 year training course on excision of endo, so defo the best treatment, just because a gyne says he specialises in endo dosnt mean he has completed thus course, 

[Jade01 in reply to Tboag]

Ah brilliant! I didn't know this, I will look into it. They are probably just private though and not NHS right? 

X 

[electricjaws]

sorry to hear about your experience and the fact your specialist is rude to you, I must say I have been in and out of hosp over the years and have had a few major surgeries and I can tell you that arrogance must be taught at med school as lots of surgeons are a bit haughty and arrogant, it seems to be in their dna!

that said you do have the right to complain or at least air your views about this individual, you can get advice from PALS which are a complaints service in every hospital

although you might not get much of a apology as the nhs seem to stick together if you make a complaint at least you would have put it out there and might make you feel better for at least putting pen to paper

you may not have his surgical experience but you certainly don't deserve to be talked down to, and from what you say ,you certainly have more manners than this surgeon

the thing is if you are in pain and they can't work out where it is coming from , it's a easy option to say "it is all in your head"

I have had fibromyalgia for 16 years  and when I was first diagnosed 16 years ago ,you were told " it was all in your head" my answer was of course it is in my head, as it is in every muscle and fibre of my body!!

[Jade01 in reply to electricjaws]

Haha oh this did make me giggle! It does seem to be the commen thing I'm reading, especially with endo and general 'women's problems' It's like they know you can rarely permanently cure these kind of things and they are as rude as possible in the hope you will just bugger off and live your life in pain.

It's absolutely outrageous and I have had enough of it! When you are in constant pain and at your wits end the last thing you want is for someone to be horrible and not very helpfull, it's such a worry as it is!

 I am definatley going to send a letter in. I thought at first he spoke down to me so much because of my age but after the actually surgery I spoke to the women in the bed next to me and she said he was damn right rude to her!  

How are you getting on now then?