Waiting for my second lap and feeling like I'm going slightly mad?

[ggno]

Hi everyone,

Long time no speak! The last I posted I was talking about my failed laparoscopy I think. Just to reiterate - I'm not diagnosed as of yet, but I have suspected endo.

So I basically just wanted to rant and see what you guys think of what my new gynae consultant said to me. He said that my fatigue has nothing to do with endometriosis because it's not a symptom of it. Plus he said that I don't sound like textbook endometriosis because I'm in chronic pain every single day rather than just around my period, so therefore I apparently can't have endo. I'm going in for another laparoscopy at the end of May because I practically begged him, but he's making me feel crazy.

Are any of you who are diagnosed in constant pain every day of the month, not just around your period? I haven't actually had a period since January after I was put on a load of meds to stop constant bleeding. But the pain is very much there every day of the month.

Another reason why I'm feeling crazy is because recently the pain has been a lot more bearable and my bowel/bladder related symptoms have been a lot more under control. Compared to the pain I was in say a month ago, I feel a lot better recently (still have symptoms and chronic pain etc. but not as severe). Could this be because of all the medication I'm on? I'm on cerelle (mini pill), citalopram (for my depression), omeprazole, naproxen and cocodamol, taking paracetamol too. Could I actually still be in a lot of pain, but the pain killers are actually doing their job and masking it? I've never found pain killers to be that effective but since I've been on cocodamol and naproxen instead of just mefenamic acid, the pain has been so much more bearable!

I guess I'm scared that it was all in my head and that I'm fine now. Part of me knows though that the pain I was and still kind of am feeling was very real and has had me bed bound for weeks.

Just looking for some advice!

[Hidden]

I had constant pain pre-surgery. It wasn't the same level of pain all the time - the pain I had with my periods was excruciating, but I had a low level grinding ache in my right hip and lower back pretty much all the time. I also had fatigue and bowel problems all the time.

I did have reduced pain when i started on hormone treatments and with them, I was able to manage my pain with mefenamic acid/diclofenac/co-codamol taken in combination. The whole point of the medications is to reduce pain to a more manageable level. Painkillers aren't 'masking' pain, they are treating it (I hate that expression, the drug treatments aren't an attempt to hide anything, they're to help us manage the pain of an incurable disease so that we can function on a day to day basis).

[ggno in reply to Hidden]

Our symptoms seem quite similar - thanks for replying. However, I would argue that pain killers do not treat pain, they do in fact mask it. These painkillers aren't treating my endometriosis pain, they're blocking the messages that my areas of pain are sending my brain to tell me that I'm in pain. "When part of your body is injured/in pain, special nerve endings send pain messages back to your brain. Painkilling drugs interfere with these messages, either at the site of the injury, in the spinal cord or in the brain itself."

So although the painkillers I take are reducing my pain to a manageable level as you say, they're not treating the actual cause of the pain, just masking it. It's just like putting a band aid over something, but not treating the cause (endo). Thanks for the reply.

[Hidden in reply to ggno]

Are you worried that because the meds are starting to help you manage the pain, that doctors will say you don't need further treatment? In my personal experience I haven't found that to be the case, if anything my consultant and nurse were just relieved that they were able to give me something to help me cope while I waited for surgery. There was never any suggestion that if I could cope on pain meds, I didn't need surgery or more help. It's OK to feel better on the drugs. It doesn't mean that everything is fine or that you won't be taken seriously. x.

[ggno in reply to Hidden]

Thank you again for your reply - yes I guess I am worried that I won't be taken seriously now my pain is more under control, although I don't know why I'm so worried because my lap is all booked for 25th May regardless. I guess it's just on my mind because of years and years of being told that nothing is wrong with me and that my pain is normal. I think my doctor is also just relieved that we've finally got a good combo of meds to help me while I wait for surgery. But I know that I still need the surgery to actually treat the endo because I know how it can affect fertility and I really really want children.

Thank you for helping me to think more rationally!

[Hidden]

Fatigue and month long pain are definitely symptoms of endometriosis. Any doctor that tells you otherwise doesn't know what they are taking about :/ xxx

[Lauras_pen]

First of all, your doctor is completely wrong. Fatigue is a symptom of endo. It is a major one for me, I'm waiting for my excision surgery before I know how much of it is down to the endo as I have other diagnosed conditions which cause fatigue too.

I used to only get pain around my periods but when I went on the mini pill it basically spread out during the month...the mini pill helped me hugely for about a year then the symptoms started progressing again, and the gynaecologist convinced me to to change to the coil and now I'm in as bad pain as I was with my period but every single bloody day. So both of those things are possible, they probably mean your endo is more severe (although the grading of endo and symptoms of endo don't always match up).

How long ago did you go on the mini pill? It took about six months to settle everything down for me, so it could be that you've now reached this stage?

Can I just check you're not taking cocodamol and paracetamol at the same time too? I do think you get better at managing an coping with pain over time too, so it could be that your routine now helps you more too.

[ggno in reply to Lauras_pen]

Thanks so much for replying, your reply is really helpful.

I don't understand why my gynaecologist said that because he calls himself an 'endometriosis specialist', and if you even type it in on the internet, a major symptom is fatigue. Fatigue is hugely impacting my life, with me having to take hours of naps a day to even be able to function.

I went on the mini pill in early December, and I'd say if anything my pain has just gotten worse and worse leaving me pretty much bed bound through February and March. But as I say, with these new meds (naproxen and cocodamol) the pain is so much more bearable and I can generally get about my usual day.

Yes I am taking paracetamol and cocodamol together as my doctor said that that's ok, but not that regularly, only when the pain is really bad.

Thanks so much for your help!

[Lauras_pen in reply to ggno]

Ah you've reminded me of something I meant to say. The mini pill did make my pain worse to start with. I went to my doc like "this isn't working, things are worse !" But she convinced me to stay with it and by month 5ish it calmed down and started being helpful (also when I came off it I realised it was helping a lot more than I knew!)

Although it sounds like it's being about as effective for you as my coil is for me. (I.e not at all)

I do find cocodamol helps my pain a lot but it also spaces me out a bit so I feel very drugged up and can't do anything because of that! 😂 So it could well be that helping you.

Hope you find a better gynae!

[ggno in reply to Lauras_pen]

Thanks again for your reply! Yes you're right about the cocodamol, I feel extremely spaced out all the time!

Hopefully the mini pill calms down - it's definitely stopped my bleeding as I was bleeding non stop for about two months at the end of last year. I was changed from the pill 'Rigevidon' because of a history of heart problems.

Fingers crossed this laparoscopy will give me some answers, and validate all the pain I've been in for years and years. Thanks a lot!