Naive newbie seeking endo warriors advice

[glittergreb]

Hi everyone I'm new here,

I was diagnosed with endometriosis via laparoscopy in June 2018, stage 2, during my follow up appointment with my consultant he recommended me having the mirena coil which I had inserted in October 2018. Before having it inserted I was still experiencing irregular periods and horrible pain but had hoped that the coil may help, it hasn't.

I'm bleeding more days than I'm not, having constant pain, bloated belly and still experiencing painful sex. On the days where I'm not bleeding I can go from having a good day, to within 5 minutes, bloated and doubled over in pain which can make my legs feel numb. I have managed to get an appointment with my consultant in 2 months time.

I had an episode the other day that I have never experienced before, the pain was 100x worse, I was on all fours being sick, almost fainted and felt like something in my lower left groin was about to pop, it lasted hours and I wish now I had gone to a&e because I really felt like something was wrong.

I feel like I turned a bit of a blind eye and was ignorant towards the fact that I have been diagnosed with endo and then a bit naive to think the coil would solve all of my problems and I wouldn't have to see my consultant again (I am chuckling at myself whilst writing this so I will completely accept you laughing at my naivety). I am now going through the emotional feeling sorry for myself phase (which I absolutely hate).

I came across this site which I think is brilliant and have spent days reading peoples posts, it feels like a community where people are just there for each other and understand.

I guess I'm here to learn about other people's stories and their experience dealing with endo, so please feel free to share below.

Have people found that their endo has come back quickly and how many laparoscopies have people had?

Has anyone found that their stage of endo has become worse with every laparoscopy?

If you have got this far on my post I want to say thank you for taking the time to read and may your endo be kind to you today!

All the love <3

[Catness]

Hello,

First of all nobody on this forum would ever laugh at you, there is nothing to be ashamed of that you hoped that a method presented as a treatment option would work, however as you have unfortunately learned it’s a matter of trial and error.

In an answer to how many laps / I’m about to have my 6th lap next week. I’m stage 4 with adenomyosis and interstitial cystitis too. I really do think that my symptoms got worse after my first lap I don’t know the science behind that. Perhaps I just became more aware once I had a diagnosis, perhaps it was made worse by surgical scar tissue - I’m not sure.

After my first lap I was symptom free for around 11 months... and I can’t remember a time of being symptom free since but admittedly I have a complex case.

I think you should go to your GP and ask to have an ultrasound to make sure that your coil hasn’t dislodged or slipped down a little just to be on the safe side, you could do this before you see your consultant. I think going to see your consultant is a great idea to talk further treatment option.

Have you explored diet and lifestyle as a way to improve symptoms? I know I tend to bang on about it but diet really can help symptoms such as pain, bloating and fatigue. I always recommend Carolyn Levitt’s ‘recipes for endometriosis’ book and her website ‘endo resolved’.

Hugs to you! X

[glittergreb in reply to Catness]

Hi Catness

Thank you so much for your response, i really appreciate it.

Also sorry that you have had to go through so much with endometriosis. I hope it gets better for you! It’s sad isn’t it that we endure so much and it still keeps coming back

Yes I think I do need to go to the gp to make sure the coil is in the right place

Thank you for the recommendation about diet, i will definitely look into this! I would completely change my diet if it would help with pain and bloating.

Thank you again, much love x

[Barbie999]

Hello glittergreb 🥰

I have endo. I have had four laps. First couple were great. Pain free for aaaagges.

After my last one unfortunately the pain came back within a few months. I think it’s because the more you have the more scar tissue and adhesions you get. My consultant has said he isn’t going to do another one for a long time because of this. So I’m still in pain and have constant diarrhoea every day.

You aren’t alone. I’m sending you hugs xx

[glittergreb in reply to Barbie999]

Hi Barbie999

Thank you for your reply I really appreciate it!

Sounds like you have been through alot sending lots of love! So there’s nothing they can do for you until you have your next lap? Are they trying any other treatments?

Big hugs xx