Someone please help

[Marianna16]

Hi,

To cut a long story short;

Jan 2019 appointment with consultant

July 2019 put on waiting list for lap told approx 20 weeks

Oct 2019 still waiting called for update they said now 38/48 weeks 😩

I physically cannot put up with this pain anymore. I haven’t even been diagnosed yet it may not even be endo I feel so lost and lonely. To top it all off me and OH been trying for our second child for nearly 4 years now.

Very very close to cracking. I need advise and my spirits lifted pls 😢

[Gina32]

Hi,

I was exactly in the same position as you. I was close to breaking point.

I went back to my GP and explained how much it was effecting my mental health and physical ability. She sent off for a ‘re-referral’ explaining to my consultant that my case had become urgent and that she was unhappy with the service I had received from the hospital. I also asked for a copy of this letter as I needed to feel as if I was more in the loop of things.

I then also sent a very unhappy email to my hospitals complaints department, dating every piece of evidence possible and how the NHS guidelines don’t fit to how long I had been waiting etc and how I had been re-referred to an ‘urgent’ case yet my letter from the GP had effectively been ignored.

Within 2 days I received an email back apologising and saying they were sorting it. Within a week from that I had a phone call giving me a surgery date (which was then only a month away from that call).

Hope this helps, you really have to dig your heals in but it’s 100% worth it.

Good luck!

[Marianna16 in reply to Gina32]

Thank you so much. I really feel I’m on the edge of breaking point, my period started today 4 days early completely unexpectedly so been in absolute agony. Really not sure how I’m going to manage the school run tomorrow 😢 x

[HE12]

Hi, really sorry to hear that you have been waiting so long. I'm not in the same boat as you in terms of waiting but have been trying for a second child for 2 years and got referred to a fertility clinic which has set the ball rolling for me. Have you been referred to one at all? Xx

[Hopeful1s]

Hi, a couple of things based on my experience:

I was diagnosed with endo of January this year with an MRI as my issue was very obvious. I had choc cyst, kissing ovaries which is a tell tale signs of endometriosis, so I didn't need the lap to tell me what my problem is. I was told 6 months waiting list but the letter for surgery never arrived. So from April I started ringing the gynae dept of the hospital every week. Eventually someone told me, no its more like 9 months. I felt very aggrieved and upset as I put everything on hold in life for this surgery.

The weekly calls asking if anyone had cancelled etc. is really important. They get to know who you are. Eventually I got an appointment with the surgeon who my case was assigned to because I contacted his private clinic and asked if he would just operate on me privately as I was now willing to have it done regardless of cost. He said no, not possible as I need too many experts and has to be done in the nhs hospital with all the people at this specialist centre.

But he said he would do his best to move me up the list. So I finally got a date for surgery in Sept, 9 months after diagnosis. The waiting lists are sooo long in the London area.

However because I had asked to be on the list if there was a cancellation, I got a phone call in August and they asked if I would want to come in the next day. I said yes even though it was a scary thing to do because I know how precious their time is and how up against it they are on their lists of patients waiting. I hoped I also helped a fellow sister who's been waiting for a while to take the place I didn't need in Sept.

What I'm basically saying is hassle them but be nice, firm, polite. They will help you as they understand your plight but it's crazy the amount of people who are struggling with this awful disease, and there just are not enough experts available for doing the surgery. 9 to 12 months is actual wait time unfortunately due to this.

I hope you get your date soon, sympathetic to having to get on with life when you are really feeling awful.x

[Annoot]

I know how you feel ...been in the same place where I was trying for baby foe years but couldn't get pregnant at that time for nearly 3 years Gp would not even refer me as they did not believe it was endometriosis that was causing the pain I always complain about .through all of that I was getting depressed by the day .

When you are stressed out it's not going to be easy trying for baby as your body sense that stress...you need distraction and you need to relax..not easy doing when you have physical pain could be from endometriosis.

My distraction was homeopathy therapy...it helped some of my friends to get rid of endometriosis or whatever other struggles they had... while I was waiting for my long waiting list to be seen at the hospital I went to see a homeopathy and it was useful and very positive distraction and less stresses. I have it a try as I had nothing to loose .and I'm glad I did .

Until you go to you hospital appt seek an alternative way of getting an answer in my opinion. I do hope you hear soon from your hospital.good luck

[StefaniaJW]

It's hard, but what's harder is to undergo a surgery just to get diagnosed and not treated. It's better to wait longer and get surgery done right the first time rather than getting it done poorly and superficially right away at the risk of needing another one a few months after or even a few weeks after.

May I ask you to PM me and tell me the name of your surgeon?

[Hencharl99]

Hi -I’m new on here & can't believe how many women are suffering & having to wait for treatment.

Your post resonated with me as I too reached breaking point with crippling pain & no sleep for over 3 months (previously had years of unbearable periods)

No one should have to put up with long term chronic pain.

I went to A&E last week in the early hours as I was writhing in pain. Previously I was sent home with co codamol but this time I was adamant that I wasn’t leaving without answers. I was given morphine & they tried to send me home but I literally cried & told them I couldn’t cope any longer.

I was sent to the gynae ward & within a few hours a consultant diagnosed me with endometriosis- I had a scan the same day which showed a chocolate cyst. Again the consultant tried to send me home & put me on his waiting list as I wasn’t ‘an urgent case’. Absolutely no way was I going home. I explained how I felt like I was in labour every night & was at breaking point. So within a few hours I had a laparoscopy but due to the severe endometriosis they couldn’t get near the cyst.

So I guess what I’m trying to say is you HAVE to fight & insist that you get answers. If you’re in agony during the night go to A&E. I was ringing my doctors daily when I was at my worst. I absolutely refused to get fobbed off any longer & it’s the only way to get results.

Good luck.

I’m still in pain but at least I have answers. Hope you get some too!

[Marianna16]

Thank you everyone. Apologies for massively long delay in replying!

So the same morning I posted this I ended up at my GP out of hours with my pain, he prescribed me tramadol which I had never had before. I took 2 and tried to go back to bed. Big mistake, my body clearly didn’t agree with tramadol and I spent the next 2 hours with severe sickness and diarrhoea. I then started to get chest pains which really worried my OH, he called 111 back who then sent an ambulance. Heart trace came back fine luckily and I refused to go to a&e as our local hospital is always stupidly busy I didn’t want to be sat in a corridor for hours taking up precious time of the ambulance staff. So I decided to get an appointment with my GP.

Fast forward a couple of hours my GP wanted me to go straight to the hospital as she felt the pain I was having was further up. She was worrying about appendicitis. I knew it wasn’t this was 1000% pelvic pain. So I get to the hospital at 11am and told to wait in a&e waiting room. 3pm comes and surgeon comes and examines me in a side room. He states my white blood cell count is high so he wanted me to go for a scan. I sit in a&e (in excruciating pain at this point) for another 7 hours to then be given a trolley bed on a&e. They gave me some codeine (finally!) and two tummy injections which I didn’t have a clue what they was! And then finally admitted onto a ward at 12am 😩

I get little sleep even in a room on my own, to be woken at 6am by another surgeon who suddenly thinks I’m fine to go home without scan and without seeing the gynae team like I was promised.

Now at home in the same pain with no answers 😫 I really have no faith in getting a diagnosis of some kind. Or even being pain free for more than a day 😔