Endometriosis symptoms : Sorry in advance... - Endometriosis UK

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Endometriosis symptoms

AS1998
AS1998

Sorry in advance for the essay! I first noticed my endometriosis symptoms around a year ago, and as the year went on they got worse and worse to the point I couldn’t have sex because of the pain and I was in constant pain. I was also diagnosed with IBS due to constipation and stomach cramping. I had a laparoscopy in March which showed everything was ‘normal’. After the lap my symptoms practically disappeared and I felt confused but too relieved to care! I then found out I was pregnant (conceived only a few days after the lap) but still thought nothing about the pains. I had bleeding and found out the baby had stopped growing inside of me, the miscarriage part came three weeks ago to which the doctor said ‘once the miscarriage happens wait three weeks and do a pregnancy test, it should say negative and your body should begin to get back to normal’. It has just been three weeks and the endometriosis pains are back and worse than ever, I’m severely constipated and can’t even walk properly due to pains on my right side (my pains are always on my right!) I have read up about endometriosis in the bowel and that it isn’t always seen via laparoscopy- does anyone have any advice on where I can move from this? Can I request an MRI scan? I have so many endometriosis symptoms and am convinced that this is what’s wrong with me!!

21 Replies
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Sorry about your miscarriage.

You should go back to get checked. Was it an experienced endo consultant who did lap? Talk to GP or consultant about the pain, constipation etc? If you aren’t taking anything to help the bowels ask about that as well. Numerous things could be, MRI could possibly help, no reason not to ask.

Good luck

I am really sorry to hear about your miscarriage too AS1998, that is really sad to hear. My thoughts go out to you.

I wanted to reply to your message to say that in my experience, I would definitely recommend a MRI scan. I was in severe pain with my periods for a bout 5 years, I had a laparoscopy and it came back that I didn't have endometriosis, so I battled on thinking I was somehow making up the pain that I felt and that it was maybe in my head. Then when I came off birth control, the symptoms got even worse, on the heaviest days of my period, like you, I could hardly stand. Like you also, the pain was more severe on one side. I went in for a further laparoscopy and I advised the consultant to pay particular attention to my one side and also my bum area as that's where I was experiencing the most pain. When I awoke from my surgery I was advised that they found the tiniest spec of endometriosis on my left ovary (which was the opposite to the side where I was experiencing the pain) and they removed it. I waited for my next period hoping that I had been cured, but I had my period and the pain was just as bad. I then requested an MRI scan which was carried out just under 2 months after my laparoscopy, and the results told me what I knew all along but the laparoscopy's didn't detect, I had stage 4 endometriosis that had attached my rectum to my uterus, was in my bowel and also my bladder.

Sorry for the long story but I just want to emphasise to as many people as I can that you know your body best and it's not acceptable to have to go through so much pain each month. From my experience the MRI scan finally proved what I was going through and made the medical experts listen and take action, rather than being constantly told that I should be able to manage the pain with paracetamol.

I hope this helps. All the best

ZeeCM
ZeeCM in reply to Alaska20

Hello,

I am just wondering what type of MRI you had done? Is it just a pelvic one that detected all of that?

Alaska20
Alaska20 in reply to ZeeCM

Hello ZeeCM, yes, it was just a pelvic MRI I had done. It was done really quickly, but I did have to wait a long time for the results to come back.

ZeeCM
ZeeCM in reply to Alaska20

My goodness.

May I ask if you had any bowel symptoms? You say your uterus was stuck to your rectum with endometriosis, did that give you heavy periods or absent periods?

How on Earth did a laparoscopy not detect this for you?

AS1998
AS1998 in reply to Alaska20

Thank you so much for this - you have really cleared my head as I felt like it was a vicious cycle and I was made out to be ‘exaggerating’! I’m waiting for my follow up appointment from the laparoscopy (done in March but then lockdown has delayed my appointment) - is your pain slightly worse when constipated? I’ve been palmed off with having IBS when I think it’s a much more serious matter!!

Alaska20
Alaska20 in reply to AS1998

Sorry, for not getting back sooner. My endometriosis pain was the worst the first two days of my period, that's when I could hardly stand or walk. Going to the toilet was just a horrific experience during those 2 days. I wouldn't say I was constipated, but it was so painful to go to the toilet. Then after the 2 days I would just get an ongoing dull ache in my back and bum for about a week and half/2 weeks after my period.

I think with Endo it is often missed because the symptoms can be similar to other things. I am not an expert on IBS but if you are getting the pain/symptoms at the time of your period then I would def investigate the possibility that it is Endo. It might be that you have both IBS and Endo at the same time.

Yes, don't like the GP's palm you off, being in pain is such a horrible thing to go through, especially when you know its going to happen every month. I hope that you get some answers and some positive steps towards making it better.

SuzCurran
SuzCurran in reply to Alaska20

Can I ask, what treatment did you receive after they found endo properly 😊

Alaska20
Alaska20 in reply to SuzCurran

Hi SuzCurran, after I had the results from this MRI I sought specialist help privately, and paid to have a laparoscopy with an Endo specialist. I had already had countless scans, tests and 2 laparoscopys through the NHS and each had failed to pick up that I had stage 4 Endo. I know the NHS are fantastic and we are lucky to have them, but I did feel really let down by them with my Endo, I just felt like the knowledge and understanding wasn't there.

The 2 laparoscopy's on the NHS lasted less than 15 minutes, the one I had privately was 3 hour surgery, they removed Endo from the outside of my bowel and bladder, both sides of my pelvic wall and the tissue connecting my rectum to my uterus. I still get pain in my bum because the Endo remains inside my bowel, but so far I have been able to control the pain with ibuprofen, so I hope that continues.

Hi

First of i am so sorry for your loss, and wish you a speedy recovery in the grief.

I had a couple of transvaginal scan and which was what detected that I had a cyst stuck behind my uterus...2 months later I suffered from more pain and then was told by another Tv scan that I had two more large cyst in my left ovary. I since experienced left ovary, thigh, leg and lower back pain for 11 months till I referred myself to a endo specialist.

There my endo specialist was confused as to why my last hospital gynaecology did not do any MRI scan... He sent me for a pelvic and lower abdominal scan. The results came back that I also had endo in my bowel so this explained why I had issues sitting down too as I had pain in my bowel. I was diagnosed with stage 4. I had my surgery in Aug 2019, removal of 3 large cyst and superficial endo spots, and correction of my bladder as it needed correcting due to endo size.

I am now still endo free since Aug 2019. I would strongly advise that you request your gynae to send you for an MRI scan this detects better accuracy of endo than Transvaginal scans if not most importantly get yourself referred to a endo specialist via gp. No more lap please if you do op for lap due to findings of endometriosis then please get jt done by a endo specialist.

I have never heard of an endo specialist... how do you refer yourself to one? I’m going to wait until my follow up appointment from the lap which was delayed due to coronavirus and I’m going to say I want an MRI scan etc I’m so definite this is what’s wrong with me, and the fact it all practically disappeared when I was pregnant (because of the hormones) just confirms it really!! Thank you x

Yes this happened to my friend who fell pregnant then all her pelvis pain disappeared after she had her son everything came back but unbearable. She is now currently waiting to go for her surgery in August for laparoscopy.

If you are in London area, you can go in BSGE centre website

Pop in your post code to see which one is closest to you

What I did was noted down 3 ideal endo centres nearest to me.. booked a gp app with a male doctor as i have noticed females do not take you serious enough

The doctor will check to see whixh one has consultation app available book you in.

This was the best decision I made discharging myself from gynaecology and going to a different hospital that has endo knowledge within 3 months I had consultation, mri results and plan for surgery.MRI detected endo in my bowel which I didnt even know I had. At the moment most gp are sending people for private mri through NHS so worth a try now that waiting.

Good luck and let us know how you get on. xx

So Interesting I find males are so so much better.

yes i have noticed that, since suffering from endo I stopped seeing my gp as they just kept fobbing me off and made it like it was all in my head. After suffering 9 hospital admission with flare up I decided to give the gp another shot which is when I saw a male doctor who did not even know my history and he was concerned that I had not been forwarded over to a specialist 11months ago. Since then I have been ever so grateful for his support.

So lovely to hear, my female GP asked if I’d tried barley water for my bladder pain 😂😂 2 weak later I had my endo excised. Shes a prize idiot

Whoisthis
Whoisthis in reply to Whoisthis

*weeks

imagine when i saw my female gp she said to wait because discharging myself from one hospital to another will be a yr wait. Within 3months I was given results surgery date. She was the one i went to for the first set of pain I had and told me to wait for at least 5 weeks before she can refer me for scans 2 days later I was taken by an ambulance for severe pelvic pain where they said my cyst could have erupted.

Sounds familiar, I can’t work out why we annoy them so much?

😭😭

Great advice from everyone can I add that I had CT, MRI, vaginal scans and a speciality 3D vaguely scan... every singe one negative over a 3 year period.

I actually thought I was going mad, but I just knew something wasn’t right.

On the 9th June I’ve just had endometriosis excised from my pouch of Douglas, pelvic wall and bladder.

Unless you get an amazing excision surgeon I’ll afraid scans and inexperience can miss endometriosis

yes that's very true, dont go for anyone to do lap if they are not endo specialist you need someone who knows what endo looks like and knows just how to do thr excision. So many ladies have been left with ablation which is causing them to return to the care of gp to get them to refer them again.

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