Feeling confused and disheartened..

[MermaidMeg]

Hi everyone,

I started seeing gynaecology in 2020 for pelvic pain and heavy bleeding and was fitted with the Mirena coil (still in-situ). Previous ultrasounds have been clear apart from a 3cm cyst and free fluid in the pelvis. I had a diagnostic laparoscopy in Sep 2021 with a general gynae which came back clear.

Since having the Mirena, my periods have stopped and the pain symptoms have been a lot better until recently with occasional spotting/flare ups.

Recently in the last 2 months I’ve been having horrible pain lower left and right, it feels like a dragging sensation and is often a sharp pain that radiates into my hips and back. I started seeing the GP who did a referral for a pelvic MRI as she suspected it could be deep endo?

I had an initial appointment today with a gynae consultant who did a pelvic exam and all the routine questions, he has taken swabs and is prescribing me antibiotics to try and see if it helps the pain as it could be infection? But if they don’t help then I will have a follow up in 6-8 weeks and then he will consider MRI, or another lap…

Feeling a bit overwhelmed with everything as I’m so tired and brain foggy having dealt with this flare up for the last 6 weeks. I know this tends to be their first line of testing and especially considering I have moved house so they don’t have any of my records.

The consultant also told me he thought it was unlikely to be endometriosis as I don’t have periods.. I did explain that I did have heavy periods before having the Mirena coil fitted.. What do you guys think??

My main symptoms are:

- pelvic pain, stabbing and crampy (seems to be cyclical but difficult to tell with no monthly bleeding - I have started tracking flare ups to see if there’s correlation but my partner has noticed it seems to be monthly)

- pulling/dragging sensation when sitting down or twisting certain ways

- fatigue/brain fog

- pain with and after sex and sometimes bleeding

- pain with internal exams

- left hip pain and lower back ache

- sometimes nausea

- occasional constipation and pain when using the toilet

If you guys have any thoughts please let me know, I’m starting to lose hope a bit and just want to know what could be causing my pain! There has been so much back and forth and it’s so so tiring.

Thank you all 💕 and I’m so grateful to be part of this friendly forum 💕

[My_Username]

Hi,

Sorry you're having a hard time.

It can be difficult to figure out what's going on as some symptoms can have different causes, eg pain with and after sex and sometimes bleeding could be cause by endo or by pelvic inflammatory disease (PID) (which is probably why the gynae suggested trying out the antibiotics) or even the Mirena itself.

Abdominal, pelvic or back pain and nausea are listed common side effects of the Mirena

Fatigue can be cause by endo, but I've heard quite a lot of women get fatigue and brain fog as a side effect of the Mirena

So, it's tricky. I hope the MRI gives you more information - it's most useful for showing up deep infiltrating endo but isn't sensitive enough to show up any superficial endo plaques

[MermaidMeg in reply to My_Username]

Thank you! It’s just so frustrating going back and forth all the time I feel like I’m going round in circles 🥲

[Jade2006]

wow your consultant sounds crap.

Don’t let them fob you off , you need to be referred to a hospital with endometriosis consultants and have a mri x

[MermaidMeg in reply to Jade2006]

I’m trying to remain hopeful that after this course of antibiotics (which I’m assuming won’t do anything based on previous experience), he will take me more seriously and go down the route of MRI/specialist..! Thank you for your comment 😊

[AlexaMac]

Hi you don’t say your age, l am 76 and your symptoms sound similar to myself. Periods after menopause and persistent constipation. I have had 2 surgeries in the last 5 months, partial then full hysterectomy to cure these.

I do not want to scare you but my diagnosis came out as 19mm endo and a stage B cancer attached to the wall of the womb.

Please ask your GP for advice and get him or her to have contact with your assigned surgeon or his/her team.

Wishing you answers and recovery very soon, Alexa 🌸🌸

[MermaidMeg in reply to AlexaMac]

Hi! Sorry for not including my age, I will be turning 25 next week. I’m sorry you’ve had such a rough time! I hope you are doing better now ☺️💕

[Thena90]

Hi, I'm sorry to hear you're going through this. I would definitely recommend that you go privately with an specialist in endometriosis. There's lots of nonsense in what they tell you: not having the period has nothing to do with having or not endometriosis, also taking antibiotics when the "infection “ is not confirmed...NSH also test everything before endometriosis, I got tired and ended up going privately. Hope you get proper answers and treatment soon 💖

[MermaidMeg in reply to Thena90]

Thank you for your reply! I know I was surprised they prescribed antibiotics with no confirmation of infection…

Can I ask where you saw the specialist?? And how did it work? 🌼

[AlexaMac]

l am to have a brachytherapy procedure in the next month to make sure all the cancer traces are dealt with. Feeling much more at ease after seeing the radio consultant today. Wishing you well very soon

Alexa 🌸🌸🌸