Anyone out there with Endometriosis, I need your help!

[EndoEnd]

I've done a post in women's health as well but posting here for more traffic.
Looking for some advice from fellow endo sisters. Or someone to tell me their experience really. First, some back story.

I've always suffered with various symptoms; horrendously painful periods, painful sex, pain during ovulation, non cyclical pain that was evident all day everyday, nausea, pain down my legs, sciatic pain, back pain, pain when emptying my bowels, fatigue etc the list goes on as you guys know. Took 8 years to get diagnosed, pretty average really. I got diagnosed in 2019, had surgery to remove the lesions of the Endo, stage two but lesions growing in areas that caused lots of symptoms.

After the surgery it was like I had a completely new lease of life, I hadn't experienced a life without pain in years. Honestly changed my whole world, I was advised to go on the the pill to control the endo but this resulted in me bleeding for months and just didn't work well for me then I was advised to get the mirena fitted. I had this in for over a year before taking it out to try for a baby. I was successful and two month later got pregnant with my DD, straightaway I had the mirena fitted as a means to control the endo. This was perfect and I had no symptoms still other than some niggles (which I thought were in my head) until now.

This past month the niggles have become the same tugging, pulling and burning feelings as before. I'm getting stabbing pain when I open my bowels again. I've had a small amount of spotting which I never had before with the Mirena. I've been getting that pain pretty much 24/7, don't get me wrong it's not unbearable and I can live with it, it's not as bad compared to what I used to have. But I'm so worried this is my endo coming back, and it will get worse again. I thought the Mirena was meant to stop this coming back or growing so quickly. I'm so disheartened that this is going to get worse, to the same point as it was before my surgery.

My questions are has this happened to any of you guys? Did your endo grow back with the Mirena, and if your symptoms were better after surgery when did they come back and did them come back slowly? Did they come back to the same level as before surgery or the Mirena?

Sorry to ask so many questions but I'm just so unsure of what to expect.
Thank you for your time.

I haven't had this with my endo, but I have heard others going through surgery and then a recurrence of symptoms after a few years. Also for me it took almost 7 months for the progesterone only pill to stop the bleeding fully, in case you wanted to consider it again

Hopefully someone else will come on with more advise but I didn't want to read and run.

Thank you for your reply. I appreciate this.
I was on the pill for 12 months and had loads of symptoms but was told to stick it out for a while. The bleeding continued and never subsided. Hence the Mirena which worked so well for ages.

I'm wondering if I'm just one of the unlucky ones.

I have had two surgeries after a recurrence of symptoms.

I went on depo-provera after the second surgery and then the implant. No further periods and no further surgeries.

Can I ask when your last surgery was?

I'm really sensitive to hormones, tried 4 different pills (for at least 6 months each) and the injection and the implant for at least 12 months each, all of which really didn't agree with me, so I gave up with hormonal birth control and actually had the copper coil as birth control before I got diagnosed with endo.

So the Mirena really is the only option for me.

Mine has never gone away. Just has periods of being worse.

Are you on the Mirena?

No I am also ultra sensitive to hormones and had it in for a while but they had to remove it because it made me unwell

My second surgery was in about 2004.

Ish.

It was a while ago.

However after that I continued to have bowel symptoms and was diagnosed with ibs, which I then found out by a process of elimination was lactose intolerance.

I am on my second mirena pretty much no periods and no return of the excruciating pain that had originally caused me to have an op to diagnose and remove (stage 4) adhesions about 8 years ago now.

I would suggest your pain sounds like it could be further issues relating to the endo and you should get it checked out - sending unmumsnetty hugs to you it sucks doesn’t it.