Could I have endometriosis?

[PennyCrowe]

Hello, I am really struggling with symptoms at the moment and I still have no answers so would love some input from others who know what this is like.

I have always had heavy painful periods since day 1, along with bowel and stomach issues. I remember being at school and being sent home because I was physically sick. This all calmed down when I went on the pill at 16. I started having IBS issues in my 20s. After having my second baby 5 years ago I didn't go back on birth control as it just doesn't agree with me and my periods were again, heavy and painful. 3 years ago they started being irregular and I sometimes have spotting in-between. I have also had IBS flare ups in the week before my period, which I seem to be controlling now most of the time, due to changes in diet. However most months from ovulation onwards I have rectal pain, bowel issues, sometimes bleeding, bladder issues, a dull pain in my left side, and what I would say were severe PMS symptoms, cramping, joint pain, sore boobs, anxiety, lower back pain.

I have been back and forwards to the GP for years and finally seen one who was helpful and she suggested this could be Endo and referred me. I have been tested for everything, had an ultrasound, all has came back fine. I even had a colonoscopy where they did find and remove a small polyp, but results from that are normal and I have had rectal bleeding since it was removed. I was at the nurse just today as I feel like I have a UTI, peeing a lot and back pain/lower ab pain but all was clear.

I have seen a gyne who suggested the coil and the pill. I have tried both and neither agreed with me at all. Other than that he wasn't massively helpful, but I am seeing him again in a while.

I am taking supplements and have made lifestyle changes and have kept a diary. I am doing everything I can to help myself. The pain during my period really varies from month to month but the other symptoms don't, the lead up is almost worse sometimes. I feel like I have 1 week of normality if that.

I'm scared about having a lap incase they don't find anything as its such an invasive procedure and I have 2 small children to look after. Would an MRI show any endo?

Any advice would be gratefully received. I don't know anyone who has endo and after searching for answers for 4 years now Im really starting to struggle with what to do next. Thanks!

[Tangoandmax]

Hi Penny,

My symptoms sounds a lot like yours. Like you my periods have always been awful, I always felt like I had one normal week a month rather than the opposite way round. The pill hid a lot of problems from me.

I’ve been scanned over and over since 2017 where they said everything was normal. I was put on IBS meds which didn’t change anything, but did not meet criteria for digestive investigation which left me stuck.

I have recently found out that if the person carrying out the scan does not have a special interest/specialism in endo, they simply don’t know what they’re looking for. I got lucky in December after 7 years, when the radiographer said he could see my endo/that my uterus is stuck (imaging and lack of movement). I have since had an MRI which has confirmed deep infiltrating endometriosis, I have adhesions on my ligaments, my uterus is attached to my bowel wall, endometrial plaque involving the rectum and my right ovary stuck to my uterus.

MRI can and does show endo IF the right people are reviewing the scans. Definitely request if you can. I’ve since been referred to the specialist clinic as my general hospital have said it’s too complicated for them. If you can get in at a BGSE centre do, as you’ll be much better off! X

[PennyCrowe in reply to Tangoandmax]

Thank you for your reply. Im sorry to hear about your endometriosis, but I'm glad that you seen the right person to help you and you found some answers. I will definitely request an MRI and ask who will be doing it. x

[Leahgal]

Hey there.

I have some similar symptoms to you and it sounds that despite different investigations you are not getting any answers.

I agree with the other reply around having an ultrasound by a specialist who knows what they are looking for.

Yes a MRI should show any Endo, but again if the person reviewing knows what they are looking for. Maybe ask for the MRI and look up Endo specialists?

Have you checked for any infections? Have they done swabs etc?

I hope this helps and you get answers soon. X

[PennyCrowe in reply to Leahgal]

Thank you! I have had lots of tests, no infections or anything abnormal has shown up in any of them. The only thing they have ever found is a slightly low iron level last year, which is now normal again. I'm seeing the gynaecologist again soon so this is really helpful information for me to ask the right questions, thank you x

[Tangoandmax in reply to PennyCrowe]

Just want to pop on this to say my iron has dipped three times over the years whilst waiting for diagnosis, they didn’t investigate/couldn’t provide explanation for it. So similar there again.

Hope you manage to get that MRI sorted and have answers soon xx

[Emmaja_ne]

yes I have all of those symptoms. I had an mri which did show endometriosis, fibroids and cysts. I’ve just had surgery and I’ve got deep infiltrating endometriosis, most of it has now been removed. A lot of my endometriosis was around my rectum and pouch of Douglas. I have a 2 year old and have managed. The first week recovery was rough but I was lucky enough to have good support, I was home the same day as the surgery.

[ccfd9]

Hi

Cameron Nezhat in Atlanta is an endometriosis specialist and he developed a questionnaire app which has shown a reasonable degree of accuracy in predicting endometriosis. If your score is 90 or above then it is very likely that you have endometriosis, a useful tool to get a referral.

Have you looked at changing your diet to ease your symptoms? For example 80% of people get some relief by avoiding wheat and gluten from their diet. A anti-inflammatory diet can also help. A good nutritional therapist like Dian Shepperson Mills who knows about endometriosis may help endometriosis.co.uk/

Good luck

[MonieBL]

Hey Penny! Your symptoms definitely resonate with symptoms of endo, IBS can sometimes mask symptoms of endo too as food can flare it up. I agree with the others that an MRI would be the best place to start if you’re unsure about lap surgery, I had an MRI last year that showed my endo, I’m having a lap this year and the consultant has requested that I have another MRI beforehand, so it’s obviously a valid tool in diagnosing endo. So sorry you’re struggling with medical professionals not giving you a straight answer or being proactive in investigating your symptoms, it’s so frustrating xxx

[Pink090]

the symptoms were very similar and I had every test going that didnt show endo, had to make the decision to have a laproscopy and was scared to incase I didnt have it, but did and it was found i had stage 3/4... so its a hard decision to make but think about it and see. The recovery was 2 weeks but I do feel mines returned as back to having painful peroids etc. sorry probably doesnt help you much