My first laparoscopy surgery. I really need some advice, a little hope and help. I feel lost and fed up. More than before.

[Emmajayne91]

is may be a triggering post

August this year I was referred to a gynaecologist, after five difficult appointments with my GP. I never mentioned what i thought was wrong with me. I told him my past and current symptoms; Pain during intercourse, urination and bowl movement. Irregular heavy, painful periods, spotting, clotting and tissue from my vagina. Extreme abdominal pain with or without my period, fatigue and pain in my shoulder, neck, lower back, leg and foot. All rapped up in a sever depression.

He instantly asked me 'do any women in my family have endometriosis?' As far as I was aware no. He then said that he believed I had endometriosis. From there, he put me on the waiting list for surgery. This was the last time i saw this doctor/surgeon. I waited weeks. My symptoms grew. I couldn't work as the fatigue made it hard to get out of bed most mornings, so I would lay there all afternoon, not to mention the extreme pain I would get in my pelvic area, going up into my rib, causing me to lose balance and almost pass out randomly in the street. So working wasn't an option. This has happened a number of times without being on my period. I became dependent on pain killers that lead me to an accidental overdose. All the while my depression growing stronger as the days went by. This, as you can imagine taking a massive toll on my relationship. My partner is also stressed and full of anxiety. But he's stood by me. We have argued and found it triggering his own anxiety. For him, not being able to help me has left him feeling depressed and useless. It doesn't just effect the person that is suffering.

Last week i got a call. They had a last minute Cancellation, so I accepted the space. Had my pre-op a couple of days later were I met with a nurse. She took my blood, wight and briefed me. I had my surgery Monday there. My surgery was awful, rushed and such a let down. I arrived at 8am, my partner and mother in law were told to leave and to wait on a call from me. I entered a room made up of wards, with rows upon rows of beds. On each bed was a clipboard with documents and hospital clothes. The place was busy, noisy and fast. I immediately felt riddled with anxiety. I noticed that everyone was in for different types of surgery and not just gyno related. A nurse introduced herself and gave me a briefing and the same with the anesthesia nurse.Then a young doctor introduced herself 'i will be attending (we will call him Dr A) Dr A during your surgery...' She explained that they were putting blue dye down my tubes and checking for endo. Then she left. An hour later I'm in the anesthesia room i check the clock its around 11/11:15am. 1,2,3 I'm awake again. It must have been around 12:30.

I never met the surgeon until after my surgery, i was in surgery for less than an hour and then back round to the ward I started in. He spoke to me around 5 minutes after I woke up. So i was in pain and groggy. He was brief 'we never found any endometriosis. This isn't a gyno issue. Possibly bowl problems so you need to go back to your doctor'. He turned to someone, a nurse perhaps and said 'yeah no scaring or anything'. Then Dr A left. I started crying and shaking. I was confused, in pain and uncomfortable. The nurse asked me what was wrong and then wondered if it was my anxiety. I said 'I'm confused. Can i please speak to the doctor?' I was told 'sorry. But no. He's to busy.' And that was it. It was all rushed and confusing. Then i was out within two hours. Standing in The hall way with my partner and mother in law, i just let out a cry. My partner held onto me and helped me to the car.

I feel devastated, let down, crazy, alone and lost. Very very lost. Trying to explain to my family what's happened is even more difficult. Because, well Dr A said nothings wrong. He is a doctor, so he must be right? I have to do this all over again. This is something that has been growing worse since i was 13. I am now 27. I feel no one can hear me. Like I'm being told to 'shut up and deal with it' or 'there's nothing wrong with you.' Like its all in my head. But its in my body. I feel it i know its there. Maybe he couldn't see it. But surely I'm not crazy? What do I do now. How do I fight and not give up?

[weekari]

Omg you poor thing. You're having such a difficult time. Surgery its scary in itself, it's a lot to go through and then on top of that, to just be left with no answers and no help. It's a lot.

First thing is, you've gone through surgery and that alone can have a massive impact on people. Anaesthetic can really knock people off for a week or so afterwards causing a bit of anxiety and low mood. So just go very very easy on yourself and be very gentle and kind . The next thing is, just because they didn't find anything doesn't mean that there isn't anything wrong. You have loads of symptoms and there will be a reason for you experiencing these. You're not imagining this. We know when we're in pain and we know when something is wrong and it is really important that you do not doubt yourself. Just because the doctors didn't find anything, doesn't mean there isn't anything there, all this means is that they didn't find anything. Unfortunately, doctors and not very good at admitting when they don't know something or when they have failed to understand something.

I had a lap two and a half years ago and was told that nothing was wrong. He told me that he found 2 fibroids but that they would not be causing me the symptoms I was experiencing. I was told that my difficulties were due to IBS and stress, which I accepted. I felt like a fraud and I felt that I had had unnecessary surgery and there was a lot of drama for nothing. I tried to get back to work and behave in the way that everyone else thought I should, as a person who wasn't extremely unwell. I pushed myself despite how I felt. I didn't listen to my body. This carried on until my fatigue got the better of me and I had to reduce my working hours and eventually had to give up work. I was eventually referred to orthopaedics due to my chronic back pain. The consultant thought I had arthritis, which would explain my back pain and my fatigue, however, after having an MRI, I was told I had severe endometriosis. I was referred back to the gynecologist who did my original lap and he still didn't admit that he had missed this, he is now saying that this is new endometriosis. However, the fibroid that I was told was not causing many difficulties has been found to be 13 cm big and sitting pressing against my spine and rectum, is filled with endometriosis and blood. This is clearly causing me a lot of difficulties. They got is wrong but act like this is all a new discovery.

It's really important that you trust your instincts and listen to your body. You're not making it up. It's really difficult if the folk around you aren't supportive but my advice is to not waste your energy trying to convince them. Instead, just tell them what you need from them, don't try to justify it, just tell them what you need. Just because you don't have a diagnosis, doesn't mean you're now suddenly better. It changes nothing. You still need help. In my opinion, fatigue is the hardest symptom to live with. I just feel people don't understand it and don't know how to be supportive. It used to upset me so much but now I just try to remind myself that I don't need to prove how I feel to anyone. If anyone thinks I'm exaggerating or faking it, then that says a lot more about them.

In terms of what to do practically, you actually have loads of options. For the medical side of things, ask to be referred to gastro. I would push for an mri. It doesn't always show things but it can help see things that can't always be picked up.if also stay doing your research, we need to be experts in our own health. If you think you have endo, start reading about it. Must doctors don't know much about it unfortunately.

BTW Do you know if your surgeon was an endo specialist?

There are also loads of things you can do to help yourself. They're is a lot of evidence that a natural approach to endo and hormone related problems can be resolved through natural treatments (changes to diet, lifestyle, your environment, and bio identical progesterone cream). It's not an easy fix but it can really change people's lives. If you're interested, I'd suggest reading 'healing endometriosis naturally' by Wendy laidlaw. And what doctors dont tell you perimenopause by Dr John Lee.

I think after reading your message, you may also like to read 'ask me about my uterus' by abby Norman, it's a quest to make doctors believe in women's pain. Her story is quite unbelievable.

I know this is tough but you've got this. You have a lot of support on here.

X

[leah_0600]

So sorry you have gone through this. You’ve already been given all the advice I would have given you but I reiterate the fact that you shouldn’t give up- the nhs has given up on me so I’m going private. Don’t have the money but haveing go take out a loan. I know it’s hard to stay strong when your physical AND mental health is in tatters but your health deserves

You to stay as strong as you can. Keep talking to us and let us know how you get on xxx