12 years for a diagnosis of endometriosis... - Endometriosis UK

Endometriosis UK

70,734 members52,159 posts

12 years for a diagnosis of endometriosis, doctor said most common cause of period pain is STD's! My laparoscopy experience...

Jls8990 profile image
4 Replies

Since starting my periods at around age 14 I have always suffered with horrendous period pains. I was taken to a&e one time because they thought my appendix had burst, when it turned out just to be period pains. After this I was put onto the mini pill (had to have this one due to dvt in family and I suffer from migraines). For the whole time I was taking the pill it did help control the pain and cut down the number of periods I had. I am now 26 and at the beginning of this year I decided I wanted to stop taking the pill as I felt this contributed to my low moods, and also wanted to make sure it was out of my system before trying to start a family. After stopping the pill my horrendous periods came back and i am always in absolute agony for the first few days of my period, back and forth from the toilet, have been sick and passed out. It gets so bad that I can't work or do anything. Over the years I have been back and forth from the doctors regarding my periods and not given any help just told to carry on with the pill. After the worst period ever back in June I called the doctors for some pain relief and an appointment to be referred to a gynaecologist. I was prescribed mefenamic acid and tranexamic acid. These actually do really help with the pain and bring me back to normal, so long as I take them at the right time. Because my periods aren't always when they are due I have woken up several times at 4am in absolute agony.

When I went to see the doctor to be referred and explained my symptoms, my family history (nan, auntie and great grandmother all had hysterectomy and mother had womb lining removed all due to problems with periods), I was told I would not get referred, and that the most common cause of period pains in girls my age was sexually transmitted diseases!!!!!

In the end I took it in my own hands and paid to see a gynaecologist privately. Firstly he did an internal examination, then explained he wanted to send me for a scan to check for cysts or fibroids. If this was clear then he would recommend a laparoscopy to look for endometriosis. My scan was completely clear showing no cysts or fibroids, so at my next appointment with him he recommended that I go ahead with a laparoscopy.

Leading up to my appointment I spoke to more friends and clients...I couldn't believe how many people had it or knew someone with endometriosis. This was good to get info about endometriosis and what to expect from the surgery. From talking to one client with endometriosis my symptoms seemed to be exactly the same as hers. Because of how much I suffer I felt like I knew that I had endometriosis as that seemed to be the only explaination and my symptoms seemed to fit.

On Monday I had my laparoscopy. I was told by the consultant that he did find endometriosis on my bladder and around my pelvic area, and that it was stage 2. He managed to remove it and said he was pleased with how it looked after. He told me that it will affect my fertility but I am still young enough, although when I feel ready I should start trying sooner rather than later. If I'm not going to start trying for a family then he has said I will need to go back onto the pill or have a coil fitted to help to try and avoid the endometriosis coming back as this is very common. This is now a conversation I am going to have to have with my partner.

The surgery was fine, I stayed in overnight as I didn't actually go down until 7.45pm and left at a similar time the following evening evening. Prior to my surgery I had looked at other people's laparoscopy experiences and what to expect after. I have actually found that the 4 incisions in my pelvic area haven't been too bad, they're a little uncomfortable but bearable pain (and I don't do well with pain). The most pain I have experienced is in my shoulders with the trapped gas where they fill you with co2. I am trying to keep mobile and drink peppermint tea to help with this, but this pain is definitely the worst bit.

Despite it not being great news, I am glad I now have a diagnosis, so that now I can deal with this accordingly and know that there is a reason for my suffering. hopefully now he has removed I will not suffer so badly anymore!

The point of my very long story is if you feel like something isnt right then you must push to do something about it. I'm quite a confident person who will stand up for myself, but it worries me that some people are not and would just take what that awful doctor said to me. It has taken me 12 years to get a diagnosis and it disgusts me that this seems to be so common, even though endometriosis is such a common thing! My next essay to write is a letter of complaint to my doctors surgery!

Written by
Jls8990 profile image
Jls8990
To view profiles and participate in discussions please or .
Read more about...
4 Replies
JeanOsborne profile image
JeanOsborne

Hi it took me nearly 30 years to get a diagnosis. Changed doctors so many times to be told the same thing , it's just normal for you, it can't be that bad , it's all in your head. I never gave up and finally found a GP that took me seriously. Was diagnosed with with very severe stage 4 last year . Had hysterectomy this March as ovaries were to badly damaged so thought it was my best option.

Surgeon promised he would excise all endo at the same time.

This didn't happen so am still in pain. It took him 6 months before he admitted it.

Now waiting on an appointment with a different specialist who will hopefully remove the endo.

It's such a shame we have to fight so hard to be taken seriously.

Hope you are feeling much better now.

Jls8990 profile image
Jls8990 in reply to JeanOsborne

Oh my goodness that's terrible! Although it's taken me such a long time, (granted not as long as you!) I am fortunate to have found it before I planned on starting a family. I was also fortunate to have it done at a private hospital on NHS with a gynaecologist that specialises with endometriosis. I really feel like there should be more awareness for things such as endo and pcos, it can cause so much hurt and upset but wouldn't if it was diagnosed sooner! Talking about it and looking at endo website definitely helped me though!

I hope you get yours removed and are more successful with next gynaecologist!

LH14 profile image
LH14

Hi ladies,

Have you seen this survey on endometriosis uk?

endometriosis-uk.org/news/t...

I wasn't undiagnosed for 7 years started getting symptoms at 14 and first operation was at 21. So i have completed this to let the gov know of the lack of awareness and trouble i had being diagnosed!

You may want to vent also, or let them know any positives they have done!!

LH x

Gweeda profile image
Gweeda

It's just awful that women are STILL not being taken seriously and dismissed so easily or made to feel that it's our fault.

I was 23 years before diagnosis. Had 5 hours of surgery on 28/12/16 and I'm pretty sure now that I haven't had everything done that they said they were going to do. I wonder how long it will take before they admit that?!

I wish you well with your recovery. Good for you taking things in your own hands! I would be looking into recovering the money for the private consultation from the NHS. Especially with the insulting way you were dealt with by your NHS doc.

Good to hear a young woman being so strong and fighting for the treatment we all deserve.

Look after yourself! 💜

You may also like...

No Endometriosis found in laparoscopy, what is still causing pain during sex?

my periods are still very painful. If this isn't endometriosis, what else could be causing the pain...

Endometriosis- anyone had the same symptoms come back a few months after laparoscopy?

of pain, constant back & forth to doctors with mis diagnosis, i finally had my first laparoscopy...

Endo found on left USL but experience most pain on my right hand side?

do suffer pain on the left but my worst pains are definitely on the right - including lower back,...

First period since laparoscopy (to diagnose and have diathermy to endo) worst pain I have ever had. Is this common?

me to knock me out as the pain I was in was indescribable. It was period pain x a million and I am...

Worth seeing NHS gynaecologist after private surgery?

and have had a laparoscopy with endometriosis excision and removal of cyst. They found I also have...