my long time suffering with endometriosis

hello everyone, I am new on here.

id like to tell you all about my story, all comments and opinions would be much appreciated

for 6 months or longer I have been struggling with this awful illness and I am still not officially diagnosed yet. about 6 months ago I started having periods every 2/3 times a month I was put on the pill and that calmed it down and went back to normal then, I started getting horrendous pain in my stomach and back, I was back and forth to the doctors. had scans, swabs, blood tests the lot and they couldn't find what was wrong.

One night I couldn't even get out of bed or walk the pain was that bad I was taken into hospital via ambulance on boxing day last year, I was kept in for 4 nights 5 days and I hated it! I was on drips. oral morphine, codine, paracetamol, antisickness. it was horrible I had more scans I had about 2/3 different diagnosis of what could be wrong but no one could seem to put there finger on the problem. I was back and forth to the hospital spending time in hospital from 1 night -4 nights just to be given morphine then sent home.

I was at my doctors at least once a week getting different tablets, more appointments then my doctor did an examination on me the pain was horrendous and this is when she said she needed to refer me to the hospital to see a gynaecologist, so my appointment come I went to see my consultant, they examined me and she had a look of concern on her face my heart melted, she gave me a list of treatments as she suspected I had endometriosis.

Option one- to go on the pill- I am already on the pill so I said no

Option 2- have the coil I said I have been suffering for ages now and I want it over with so no

Option 3- an injection which shuts down my ovaries and sends me into menopause, I instantly declined that as soon as she said it. I'm 20 and even though there is some possibility I cant have kids I still want to keep my options open.

Then finally the operation I told her id just have that to get it over and done with.

So I have been waiting since February 2017 for this operation after doctors appointments still and ringing the hospital to chase it up. Finally I have my operation date on Wednesday 14th June.

I will fill you all in what happens next thank you for reading if you'd like to message me feel free.

14 Replies

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  • Best of luck for your operation. And good for you for no just being fobbed off with the pill. I see far too many post on here of gynaes sending ladies away with just birth control like it's some magic fix. Yes I understand that it helps some women but after that much pain I don't think birth controls gunna cut it.

    I've been told I have suspected endometriosis and before I was told this I have tried every birth control going. I've had pills, the injection, the coil and implant, non of them helped. The injection did stop my bleeding and calmed down the cramps but gave me awful migraines, i was gutted I had to stop it but was getting 4 migraines a week at its worst.

    I think going for the surgery is a good idea, I've seen post on here that if they find and remove any endo it helps alleviate some if not all of the symptoms, most importantly it can stop pain for a while, I have read that endo can grow back unfortunately.

    Best of luck once again and I look forward to hearing an update from you xx

  • Thank you! Was lovely to see you had replied! I'm on the pill now and I continuously take it! I don't bleed anymore which is good! And the pain is calming down but recently it's been awful again!.

    I hope they find out soon if you have it or not it's awful! I'm so fed up of people not believing me how bad it actually is, I always get it's probably psychological because I suffer with anxiety, but it isn't psychological! I only have anxiety because of this I can hardly go out on my own in case I collapse it's just beyond silly now!

    Xxx

  • Just read wondering how your Lap went?

  • It's next Wednesday I have my pre op on Friday

  • Drs arnt fobbing people off with the pill! Theres 3 lines of treatment for endometriosis. Contreception, chemical menopause and surgery. Surgery is only really advocated for those with severe symptoms! Why? Because we have a handful of surgeons who can perform such surgery. Endometriosis isnt rare. Theres only 24 hours in the day. We only have so much money. And on top of that, surgery usually fails. Not only can surgery fail, it can make matters worse by adding to adhesions. A Dr needs to weigh up risk vrs benefit! That is why some Drs 'fob' people off with hormones first. The pill has and can help just as much as surgery and is leas invasive with less risks! If it doesnt work then surgery is usually offered, but people need to stop saying Drs are fobbing people off! They are trying to help!

  • I have been suffering for months! ive tried everything they have offered. surely I have the right to say what treatment I want or not! I am not having my ovaries shut down at the age of 20. when there is a possibility they wont work again.

  • As you can see from the ladies original post, she has not officially been diagnosed. If I have read correctly then the only way to confirm endo is by laparoscopic surgery. Too many Doctors are just so eager to tell women to get on birth control before looking for the actual cause.

    This is what I was getting at, yes if you've had a lap and confirmed endo diagnosis then you can start trying to treat it as you've said but without an official diagnosis how do you know what your treating.

    Me personally I'd want to know what is wrong before starting the treatment. Yes birth control may have stopped the pain but if I'd didn't have an official diagnosis I'd want to know why it stopped the pain, what was causing it in the first place. Don't you agree?

    The point I was getting at is pre diagnosis it's too easy to be told to try this try that and just get on with it.

  • I should be diagnosed after my op next week

  • Ahh sorry.. old smarties for brains over here!!

  • It's okay don't worry! X

  • Your lucky it's only taken you this long to get things sorted, it took me over 6 years of unnecessary pain and suffering to get a lap. I had every symptom possible for endo and was bleeding 3 weeks a month and just at the end of my tether, my endo was there so long it had twisted my intestines so much I had a corner in it leaving me bleeding and in excruciating pain after any bowel movement.

    You were right to refuse the other suggestions given to you to solve it, they only prolonged my suffering. I took several different contraceptive pills and decapeptyl, never again.

    The one piece of advice I would give you is before you go in for your lap is to make sure they know they don't have your permission to remove any of your reproductive organs. It was only when I had my follow up appointment with the hospital they told me they didn't have to remove any of mine, that was the first time I knew that was a possibility.

    I wish you the very best, make sure to bring a pillow to put between you and the seatbelt on the way home, have plenty of loose pj's, toiletries, foods and pain relief in for after and if you could have someone stay with you for a few days it would be a great help to you afterwards, my recovery took almost 4 weeks and I was under pressure as I was to starting a new job, they were very understanding. Try to have all your bits in order so you can concentrate on recovering. I hope everything goes well for you.

  • I'm really sorryyou had to suffer for that long! And I'll make sure when I go in, I go in Wednesday. I've got pjs for on the way home after my operation as I'm not going to be in the mood for tight clothes, I've got my mum here so she'll be here and my friends going to be popping in with chocolate and to watch films. I'll remember to take a pillow with me for on the way home, I just know I'm going to be very sore and sleepy as when I'm in pain now all I do is sleep xxxx

  • Good luck with your lap, I hope you get some answers xx

  • Thank you! Hopefully xxx

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