New to this! Help & advice please - Endometriosis UK

Endometriosis UK

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New to this! Help & advice please


I am yet to be officially diagnosed. Had constant left sided pelvic pain and constant back ache, had an ultra sound scan that found a 6cm cyst on my ovary. Was sent for MRI about 4 wks later that showed it had gone. Did have a really heavy & painful period before the scan so maybe it went. Although was told it couldn't go by itself. As still in pain on and off was referred to gynae they did nothing for 3mnths as I seem to settle down. However heavy irregular periods and pain on and off they are now going to perform an internal ultra sound scan next week. They also want to fit a merina coil, but I don't want that until I have a firm diagnosis and have been told my options. In the last week my pain has returned again left side, extreme backache and pain on orgasum. Can't lay on that side and after sitting even for a sort while I struggle to get walking due to pain in my pelvic/hip area.

Can anyone please tell me will they be able diagnose endo from my internal scan, or from my MRI? Do my symptoms sound like endo or just a cyst. I am 44 and have always had painful periods that can be heavy but this pain that started Oct last yr is not like anything I've experience before. I struggle with my weight and my son gets married in a few wks so not wanting the coil yet if at all. Can anyone advise my on possible alternatives medication wise that I could ask for. Would like to think I could just have my ovary removed &that would be it. However I'm realistic & know I am very lucky reading some of your stories. Grateful for any advice anyone can give.

Thank you

10 Replies

Hey, I am sorry to hear what your going through, for hip pain a hot water bottle red got against my skIn really helps for me, as for endo vs cysts you could have both hun the only way for a confirmed diagnosis is a laparoscopy through key hole surgery x x the coil did not help me at all my personal experience I don't understand why they insist it helps I had it removed four months after having it fitted!! I do hope you get some real answers soon x x

Difficult one as an endo, adhesion sufferer with Diverculitis Disease who has pinching pain when sitting and hip pain like you frankly it could be one or a number of things. Heavy periods are often linked with Fybroids, Endometriosis either pinches or burns (i get both) even after laparoscopy and hysteroscopy in late 2007 where lots was removed as well as Adhesions (scar tissue). If you have had any previous pelvic surgery Adhesions can adhere pelvic organs and develop their own nerve supply and cause similar symptoms. I also had a Simple Cyst but they told me it would go on it's own and I presume it did. Most women have small cysts at some time but if they get very large

they may remove them. With Endo especially round menopause time they are more concerned about them as they can turn cancerous but if your still young its usually not such a worry. I tried a Mirena coil years ago for Endo it did not work for me but might for you. I think from memory it is supposed to disrupt the menstrual cycle to prevent oestrogen surges which feed endo. Anyway,

I have never had an MRI scan that is the goldstar of scans. I had a CT and am due a ultrasound

to check for cysts but ultrascans dont pick up endo and adhesions that well unless they are dense.

The only way for sure to find out what is going on is a laparoscopy (minute camera on string like tube which is inserted through tiny incision to look for problems or hysteroscopy. I think it is likely somewhere along the line they will offer you one - take it! If you find your going round in circles

like I was for years that is the fast track way of finding out. My ultrascan previously did manage to pick up endo deposits because I had so much! The CT picked up Divercultis Disease & small Hiatus Hernia (that was a surprise too). I am afraid this process is long winded and frustrating

I know all too well. If endo is picked up seek a endo specialist surgeon is my advice not just a general gyne. Many people don't initially realise some gyne's are specialist at certain things

and because of the link with endo and scar tissue (adhesions) you really do need a specialist if you do turn out to have endo. Hope this helps

Im pretty much in the same boat as you malred8, i too have had constant cronic left handed pain now for 18 months along with heavy periods with clots and pain during intercourse, and fatigue. scans and internal scans have found 6cm cyst on my ovaries which go down after my period starts. I had a laparoscopy last year which came back clear, i am now under a different consultant now for a 2nd opinnion, of which she has mentioned Adenmyosis, when the linning of the womb grows into the mussle(i think i have got that right) MRI scan didnt show any endo only a 5cm cyst on my right ovary.

I am now considering a hysterectomy as there is no cure if it is. Also the mireana coil has been mentioned but i also dont fancy the idea, i have had them fitted years ago the old fashioned ones and i dont want to go down that route, its works for some people and doesent for others.

I would ask to do a laparoscopy so i think that other than an MRI scan is the only way the can .diagnose Endo, i am no way an expert on this, just going on my own experiences and doing my own research. There are lots of people on these sites with lots of expireneces and knowlage.. good luck x

Hi there. Just to add I had an MRI scan which picked up adenomyosis. I agreed to have the Mirena fitted as my consultant said its been known to help with the pain adenomyosis causes. He said the lining in the muscle irritates it, making the muscle swell which causes the pain. I have similar pains to you, including left n right ovary pain, bad backache, hurts to orgasm etc. I can only say to persist with your consultant and ask about other options, especially if the Mirena doesn't appeal to you. The coil is my fourth treatment since all the pain started in 2006 so there are other options out there. Good luck with it xx

Thats good news that it was picked up on the MRI. let me know how you get on with the coil...good luck xx

Thanks for everyone's help, advice & support. Am nervous about tomorrow but in a fair bit if pain so also pleased to be having the test just hope they find something so we can move forward.

Hi Malred

How did you get on with your ultrasound test? Did the sonographer tell you of any findings whilst you were there?

Hope all's well, x

Hi LittleMissManx

My scan was actually a Hysteroscopy with a punch biopsy of my uterus.

Not a good experience they were running an 1hr & 40 mins behind so when I got in there felt like they were just rushing to finish clinic. I told them I didn't want the coil fitted and they were not very happy. The paperwork they had just said they were to investigate and treat heavy irregular periods. I said well its more the constant pain that I am in at the moment, the backache and left sided pain is the same ad when I had a cyst. You didn't have a cyst the dr said. Yes I did I had an ultra sound in jan that showed a 6cm cyst on my left ovary.

No but u had an MRI and that just showed a 17mm cyst on the other side which is nothing.

So I said well the MRI was in Feb and in jan I had the cyst I 'd been in pain for months and then before the MRI I had an extremely heavy & painful period with lots of large clots.

No he said if u had a cyst it would show on the MRI what u prob had is bowel pain.

I said to him that the dr thought I had endo so would this test show this. He said no I'm just looki g inside your uterus. You will have the results in 2/3 wks and if u still have pain then go bk to the consultant. I was most upset and frustrated , had the test that was v painful. So have no answers and just been left to feel like I'm making things up and been treated like an idiot an a piece of meat to be honest.

Now going to pay to go with Benendon through my work but you have to wait 6mnths from joining before you can ask to be seen. Really feel liked the nhs Wong help me at all. Especially while you have drs who don't care and seem to be pushing the merina coil like a drug peddler on the streets.

Sorry to be so negetative but that's how I feel, I'm very down and depressed right now. In constant pain and dreading my next period.

Thanks for asking though.

Anyone else reading this have similar experiences and got further by doing something or talking to someone I would be pleased to know.

Hello, if you would like more support please feel free to like the Adenomyosis Advice Association on Facebook or find the website via all usual search engines. We are based in the UK but are available worldwide - free of charge to help and support - anytime. Kind regards, Danielle x

Hi Daniellewright

Thank you, i will take a look at the site. I actually got the result back of my punch biospy of the lining of my womb and it says it 'did not reveal and significant abnormalities'.

They did take about 3 pictures of when they did the Hysteroscopy and i was looking at the screen and it to me everything looked smooth until he got to the bits he said to take a pic of and they were like little nodules so dont know if they were anything.

I phoned the consultants secretary and asked if i could have another appointment. I explained i was still in alot of pain and that i didnt want the Mirena fitted so as he said i may have endo could i see him again. The secretary said she would print out my information so he could have a look and she what he thought......very helpful. I managed to be polite and believe me that was hard as its the 1st day of my period and i'm in pain and miserable. I have had constant hip, pelvic and backache for the last 3 wks so much that i cant sit still for long at work and when i 1st get up i struggle to walk. Worst of all is the pain i get during and after sex.

I have now printed off the symptoms diary for Ovarian Cancer, not that i think i have it just that it gives you tick boxes for pain, bleeding levels backpain therefore if i keep a record its easy and straightforward for the dr to see hopefully.......well 1st i have to get an appointment.


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