Got my first lap Thursday

[ScaredOfEndo]

Good evening everyone. I'm new here and desperately need to talk to someone who isn't my husband.

So where should I start.

I've suffered with abdominal, pelvic pains, irregular periods and pain during sex. Gradually getting worse over the years. I've been tested for all sorts being told I have pollycystic ovaries. That I have ibs and a few other things. I even had to go to a&e last year due to agonising pelvic pain. I got kept in with them thinking it was my appendix. I was sent home the follow day after being told it was non specific abdominal pain.

In January this year I went back to the doctors feeling deflated yet determined to get answers. I spoke to a new doctor who I'd not met before. She told me she wanted me to come back later that day to have pelvic exam. When I had the exam she said my cervix looks abnormal and had characteristics of cancer. She sent me for an urgent referral to the gyno who I got to see after a week. He took a quick look and said just a few cysts on there. Nothing to worry about. He also did a pelvic exam and a transvaginal scan. I nearly cried in pain. It was all agonising. He said he felt endometrial lesions. He then said he wants to do I diagnostic laparoscopy. 2 weeks later I had my pre op and now here I am 2 days away from having it! It's all happening so quickly I'm not going to lie I am a little scared. What if he saw/felt something and didn't tell me? Can he do that? He said if he can he will try to zap away any endometriosis he can get to easily. He never mentioned biopsies but at my pre op I was told I would be having biopsies too.

Since the examinations I have been having so much more pain. Loss of appetite. Weight loss. It's been horrible. It's almost as though they disrupted something and now it's playing havoc with me. I've had totake days off of work.

This sucks.

Sorry for the moan bur I think my husband's fed of hearing it now.

[Faith27]

Hello! So sorry to read all that you're going through and that your understandably a bit anxious and worried at the speed of which this is all happening. I've not really got much experience myself however I'm due to have a lap end of May and very nervous about it. My sister had a scan which showed an abnormal cyst and was also fast tracked like you onto a pathway and had a pre op within days of a scan and blood test. When a Dr mentioned the C word so we were all in a complete panic which was heightened because of the speed of it all. As it is, she's still awaiting her surgery as we speak but the anxiety she had, and that we had as a family was difficult to cope with. We've been reassured that it's worst case scenario and as they can't fit her in that quickly, we have had to just deal with things and carry on with life as normal- because we don't know anything until the op has been done. She did have a CA125 test which showed a raised result which was also a concern but until the op comes and goes, we have to accept that naturally were all going to worry. I guess this is sadly the case for yourself. During this time, what I would say is to try and keep yourself as occupied as possible. Your lap is on Thursday so while it seems a million miles away, it will eventually come around- quicker if you can keep yourself busy. Perhaps you could watch a new series or go for some walks to calm your nerves or meet up with friends/ out with hubby? Whatever you prefer but festering in worry is awful so I really empathise for you.

Also, the more that you can control your worry now; the better in the long run because biopsies (I believe) aren't instant which means there's going to be a bit more waiting that you have to do.

Please don't apologise for moaning - you're definitely allowed to moan and it's good that you're reaching out for support during this time. That's positive. I hope others can share personal experience that you may find helpful. Absolute best of luck! Xx

[ScaredOfEndo in reply to Faith27]

Thank you much for the reply. I really didn't expect one. Especially so soon.

I have constant pain now. All day every day. I wee up to 10 times a day. I have internal pain when I pee and poo. Like a clamp is around my bladder or bowel. I have painfull bloat. Pain in lower back and top of bum. Pain down my right leg. Pain lower right side every day. Feeling of my insides falling out. Loss of appetite. Constantly exhausted.

I hate it.

[Faith27 in reply to ScaredOfEndo]

That all sounds horrendous! No wonder you are feeling exhausted it's definitely appropriate to be taking time off work so try not to worry about that too much. Your priority is to get through the next few days and to get yourself sorted. Take things one step at a time and if things worsen in the meantime, you can still contact your Dr to discuss any medical concerns. You can also contact Eve appeal - they have a forum on here and a helpline where you can speak to a nurse if you are concerned about any Gynacological cancer - this doesn't have to be a confirmed diagnosis, you can reach out for support if it's a worry of yours so do take a look at their website. Better than a random Google mash up of worrying info that's probably not suitable or reliable! Xx

[ScaredOfEndo in reply to Faith27]

Thank you so much. I'm actually back at work now. I only took a few days off. I can't afford it and I'm the only full time receptionist. I work 45 hours a week. I've been nearly falling asleep at my desk over this last week lol

Its so nice to have people to talk to x

[Faith27 in reply to ScaredOfEndo]

Aww bless you! I bet you are tired.. I hope you have talked with your boss or suggested that you may need some time off to recover after your op Mrs?! Self care is so important. I work in a very small team so I've found it helpful to try and manage expectations by informing my line manager about the estimation of time I plan to take off. Perhaps you should ask for some advice around this to give you some peace of mind - you don't want to be worrying about this after the op if you are finding it pressurising having to be off work. Talking to others is helpful, so so helpful so please continue to do so with us all xx

[ScaredOfEndo in reply to Faith27]

Thank you. I have used a weeks holiday to recoup afterwords

[Jojo-ba]

I think it happened all rather quickly and you haven't had time to process it. It is routine that a biopsy is done as it makes sense. I had my diagnostic laparoscopic surgery 1 year ago and all this happened. The truth is he/ she can't tell exactly so this surgery gives them a much clearer understanding of what's going on inside your pelvis. I had endo on my bowel and it caused me significant abdominal pain, I also got G.E.R.D. from having endometriosis on my bowel. I know ity really difficult but try to accept that whatever is found must be faced and then deal with that. You fear is very understandable and normal but it can be anxiety provoking and debilitating. Get the surgery find out what can be done and face it, you are not alone, please feel free to contact me again. I will be thinking of you

[ScaredOfEndo in reply to Jojo-ba]

Thank you so much. Is it normal to have it so quickly? I have acid refflux. The doctors think my stomachs just inflamed but could it be related?

[Hidden]

Hey lovely, all sounds like such a shock for you! I would be feeling exactly the same! I had my laparoscopy on Friday after a year wait (crazy long), and in the lead up to it all of my pain I experience most definitely accelerated / worsened. Only one full day to go for you until you have answers, definitely try to relax where you can if possible - a bath? Meditation? And distractions are good - book / podcast?

Biopsies are 100% routine, and whilst they initially dropped the C bomb on you the other person who saw you and found cysts, sounds like they’re now suspecting endo as opposed to C. Fingers and toes crossed for you!

Knowledge is so powerful in the face of this disease, so arm yourself with everything you can! Your symptoms sound very similar to endo ones and the ladies here are fab at being supportive / giving advice!

Best of luck for Thursday and here if you want to chat xx

[EndoJaz]

Hello, you have my sympathies. It is a scary time and no matter who is comforting u it is u that has to go thru it. The eve before my hysterectomy we all as a family went to the cinema to watch Beauty and the Beast! It was a really nice distraction. I am now waiting for a date to have my ovaries removed so scared all over again! I think hubby has the attitude that its just another op as I have had a few but every one is a panic but I try to be brave and not show the worry. I would say to you to take longer than a week off to recover tho. Also stock up on the mint tea for shoulder pain. Hope all goes well xx

[ScaredOfEndo in reply to EndoJaz]

Oh my goodness you poor thing!

[StefaniaJW]

I SINCERELY hope whoever is going to perform surgery on you is an experienced endo surgeon. It's VITAL to get it done through someone experienced and capable and not just any gyno/surgeon.

[ScaredOfEndo in reply to StefaniaJW]

I believe he is

[ScaredOfEndo]

Eeeeek! It's tomorrow!!! Do they always send you home the same day? There shouldn't be any reason to keep me in should there?

[RJS626 in reply to ScaredOfEndo]

I have limited experience having only had a diagnostic laparoscopy, but I was second to last on the list for the day and didn't end up being discharged till 9:30pm so I would try not to worry about anything like being low on the list and worrying you'll be kept overnight purely because of it 'getting late' by the time you're ready to be discharged. Only one person was kept overnight on my ward and as far as I could tell they were being investigated with a view to maybe having a laparoscopy the following day, so not a scheduled admission and came in late in the day.

No one told us on the ward (I saw from the surgeon's schedule that I peeped over at), but if you can I would see if you can find out from a nurse where you are on the list to give you a better idea.

You should definitely prepare to stay overnight though, bring comfy clothes, slippers, a book or something else, phone charger, and ear plugs/eye masks or anything you'd have ready to sleep. I waited over 8 hours on the ward till I was taken to theatre so definitely needed to have brought things to keep me occupied!

Best of luck to you today!!

[ScaredOfEndo]

So I'm now home. Was there from 8am until 6.15pm.

They found I had some bits stuck to each other so he's cut them apart and taken biopsies.

I've had the merina coil fitted which he apparently struggled with becomes the opening to my cervix was tiny.

I have been in so much pain. Have had paracetamol ibuprofen morphene codene and something else to help.

My blood pressure was really low at 100 over 51 so they had to get that up.

When I came out of theatre and they woke me they asked where my pain level was. It was 9/10.

But I'm now home. Very drowsy. Still hurt. But at least it's done.

Sorry if this makes no sense I'm not really with it x

[ScaredOfEndo]

Oh my goodness! I woke up at 1.25 this morning needing a wee. Was scared to get up because so much pain. Eventually fell asleep and woke afain around 4. This time did get up. Going for a wee had me in tears. So so painful! It was is like I'm ripping my bladder in half. Is this normal? Also farting hurts too which isn't great when you've still got gas inside.

One of my cuts has a massive bruise round which will hopefully calm down over the next couple of days. Is this all normal?

Sorry for the questions