Day of op & in loads of pain

[Joseyjo]

Today I had my diagnostic laparoscopy hysteroscopy, biopsy & mirena.

After the op I was discharged without seeing the consultant. The ward nurses gave me the results which was that everything was normal just waiting on biopsy results. I was a bit upset that the consultant didn't give me any results or even offer a follow up appointment. The ward nurse said I need to go back to my GP & start all over again.

I have chronic pain in my pelvic area & back everyday, I have shooting pain in my bottom & vagina so much I can't sit, I have leg pain, I'm tired all the time, i have had heavy periods since I was 9 often flooding, I sleep with hot water bottles & im on 8 co-codimol a day but still in pain. I don't know what's wrong with me if it's not endometriosis. I'm so depressed. I cried when the nurse told me to go back to my GP.

I was also told to go to my GP in 6 weeks to check the mirena is in place.

I haven't even been told what they are looking for or ruling out on the biopsy. Would anyone know?

So fed up, I feel like people think I'm making this pain up.

Think I need to take an assertive friend with me to the GP.

[Starry]

Huge hugs. It can be so difficult trying to get a diagnosis. Laps, even diagnostic ones are still surgery and often a bigger deal both physically and emotionally than people expect.

The biopsy will be looking for signs of Adenomyosis in the lower layer of your uterine endometrium. Your flooding might suggest that's more likely than external Endo. Do you know when you will get that back?

[Joseyjo in reply to Starry]

Thanks I really appreciate it. Just wish I didn't feel so much in the dark. I've understood more from reading this site than from any doctor

[bakequeen]

I had a negative laparoscopy last month, and I'll be honest i've felt a whole lot worse since then, because like you say I feel now as if I'm making the whole thing up, it's so hard trying to explain to work/people I don't feel well, i'm in loads of pain etc, oh well what's wrong with you? What can I say?! nothing?? I don't know? Very frustrating! And like you say as well now trying to find the right next step for me i'm not sure really where to go! I have read of a fair number of people on here who have had endo missed on the first check, getting referred to a local BSGE centre to see an endo specialist and go for another lap might be what I end up doing so maybe look into your local centre, I cried when the nurse told me I didn't have it too, I mean I don't want to be stuck with a chronic illness but I do not want to go the rest of my life completely clueless as to what's wrong with me!!

I had mirena fitted too, be prepared for that to be a bit of a bumpy ride, have had a few problems so far with that including being in horrendous pain leaving me only able to lie on the floor for hours and not being able to breathe it's so intense! So far have had one period on it and it was about 3 times the length of normal and much heavier, and they've cut my strings too short so when checking myself I couldn't find them and I went to the nurse/gp to check it they panicked and thought it had gone missing and i had to go for an ultrasound! Luckily it was still in there!

Hope you feel better soon, it can be really tough on your emotions at this time I know, just keep going keep pushing for an answer and remember there are a lot of women here to help with any queries you have along the way to recovery! Xx

[Joseyjo in reply to bakequeen]

Thank you so much for your reply, I feel we are both in exactly the same boat. It's really helpful to know it's not just 'me' and that I'm not making this up.

It's been suggested I go back to my GP and ask for an MRI & like you said see if I can get referred to a BSGE centre. However I know the waitlist is long.

To be honest I wasn't totally sure of the mirena but thought I would give it a go. Im actually dreading my first period & not knowing when it will come. Can I ask did you start the time you thought you were due on?

Thanks again I really appreciate your reply x

[Joseyjo in reply to Joseyjo]

Oh and best of luck to you too xx

[bakequeen in reply to Joseyjo]

Yeah I was unsure about the mirena too at first I was against it but they left me to feel I had no other option so I had to agree to it!

With me It's different because I have nearly always been on the pill anyway but have often gone through stages of having the monthly break, break every 3 or 6 months, or taking it continuously back to back so for almost ever I have never had a natural cycle. The past 6 months probably I have been on a new pill which has 2 red pills and 2 sugar pills at the end of the packet so that's when my period usually is now.

They told me to keep taking my pill for roughly the first couple of months on the mirena until the pain and bleeding settles. I didn't have any bleeding at first on mirena but my first period was due a couple of weeks after having it fitted, it started the day i took my first red pill (usually starts the next day or day after that) and usually I only bleed for about 4 days, and lightly. But I bled for about 12-13 days and much heavier than normal. So still been taking my pill after that and have bled a couple of times a little bit since. But not bad. It's been the pain and bloating i've really been struggling with. X

[Joseyjo in reply to bakequeen]

Same here, I felt like I didn't have a choice.

I've just read in the little booklet they gave me at discharge about the mirena that it can increase your chances of breast cancer. Will all the literature I read beforehand it was never mentioned. I'm already at high risk due to my mum & grandma both dying from it. I'm annoyed that this wasn't bought to my attention beforehand as I would have said no & put up with the heavy periods. I'm hoping to get an appointment back with my GP next week & I will discuss it with him then.

[bakequeen in reply to Joseyjo]

oh gosh I didn't know that either! read the leaflet but must have glanced over, yes definitely discuss that with your GP soon then. There also is the copper coil, containing no hormones at all, i'm not sure if it is supposed to help with symptoms like the mirena, but perhaps discuss that and see if it would be a better option for you perhaps it would be less risky? X

[Starry]

You shouldn't ever be pressured to take any medication that you are uncomfortable with.

That said, the reason they were keen is because the medical arsenal to treat endo is very limited. The Mirena is thought to be more effective because it doesn't pass through your digestion and is applied locally to the problem. The only thing stronger is chemical menopause and believe me, you don't want to go there if you can avoid it.

I had the coil in my diagnostic in trepidation. I had 5 weeks of bleeding like Niagara falls then it stopped altogether like a tap. Bliss. But, mine unfortunately didn't settle and after 5 months I decided to take it out. It's still the closest thing to working I've tried so on balance i'd always say it's worth a punt and removal is very straight forward at the GP if it doesn't work out.

[Joseyjo in reply to Starry]

That's good to know thank you