Hi! First post, can anyone offer any advice please?

[Peppapig123]

Hi!

My names Sam, I’ve been on here for a while but first time posting!

I got diagnosed with endometriosis in may 2019 after many years of problems. I’ve had 3 laparoscopies within 18 months and tried different pills and stuff to stop my periods, but they never seem to agree with me and my periods still come! The first op I had it mild over both ovaries and the pouch of Douglas. I was told it wouldn’t come back, or at least for few years and got discharged. Within a couple of months the symptoms returned worse than before and I was in pain pretty much everyday, November 2019 I had my 2nd surgery and found there was more endo than previous, adenomyosis too and my right ovary was completely stuck. I had the coil fitted at that time and started zoladex. My periods didn’t stop still and again my problems returned, I had my 3rd laparoscopy October last year and had my right ovary removed as it was completely stuck again and covered with endo and cysts and the results from the lab was it was inside the ovary too.

Which brings me to now! I know it has only been 4 months since my last laparoscopy, but I have felt no relief at all! My consultant said my first period after wouldn’t be pleasant but then I will notice a considerable difference and he discharged me. The first period was horrendous but I felt positive, since then I’ve been getting all of the symptoms I have usually got, progressively getting worse, my periods still last 10 days, the pain all starts again around ovulation so I only get a few days of minimal cramps, heavy and lots of clots, pain in my stomach when going for a wee, bad bloating, cramps in my stomach, back, hips and going down my legs, vomiting to name a few. I take painkillers and it doesn’t touch the pain at all! It’s really affecting my day to day life and I’m fed up of feeling like shit! My dr referred me back to my consultant who I see on Wednesday, he asked me what stage I feel I’m at with everything and I asked for a hysterectomy as I can’t continue like this, I have an amazing son and he deserves a fit and healthy mummy, not one that’s constantly in pain, but My dr has said it’s not an option as I’m 29 and has told me it is impossible that endometriosis has come back this quick and this hormones! Even though he’s done the last 2 ops and seen how quick it’s come back. I’m waiting for a call back for a plan, which is most likely start zoladex again and see how I go, but I’m nervous as it didn’t work before.

Sorry for rambling on, and if you’ve made it this far then thank you and I hope this has made sense!

I was just wondering if anyone else has been through this and has any advice? I feel at breaking point with it

X

[MamaofFurBabies]

This sounds awful! I am in a similar position but was blessed with a few years of relief when on the mini pill but it affected my mental health too much. My consultant is trying decapeptyl injections on me for 3 months and then said we will discuss a hysterectomy but he would need another Dr to also sign it off.... Again because I am only 32 he says they would need a second opinion. These injections for me are a trial... He said if my symptoms don't ease off with my ovaries being switched off than a hysterectomy wont help the pain but my argument was we 100% know it will at least stop me bleeding so much for so long and then that's at least 1 less thing to worry about and if the pain does continue to a certain degree atleast we would only have that to think about. I hate it when they basically say you are too young to make a decision on what you feel is best for your body/family 😡 I have step children but none of my own and that apparently means I might change my mind... I think I know my mind better than they do and I could adopt a child if we did want to expand our family 🤔lol.

keep pushing for it though and don't feel bad about calling your consultant every time your symptoms are bad....I do, his secretary must love me haha

[Peppapig123 in reply to MamaofFurBabies]

Oh bless you! I’m glad the mini pill helped with symptoms but it’s definitely not worth it when it affects your mental health! have you started the injections yet? Please keep me updated how you are on them! Oh wow! I hope it does help your symptoms and you’re not going to be in pain! I agree with you definitely! If you can stop the bleeding then can focus more on what worse best for you painkiller wise! It’s awful isn’t it? No one knows our bodies like ourselves and should have the choice to say this is what we want regardless of age. Wow! I don’t get how they can even say you might change your mind! 🤦‍♀️exactly! There’s so many other avenues you could take if you want to expand! I think it’s a hard decision to come to wanting a hysterectomy and not something that should be taken lightly, but there’s a bloody good reason for wanting one!

Hahaa I’m glad I’m not alone with that! I always call when things get really bad, I know his secretary doesn’t like me 😂

[MamaofFurBabies in reply to Peppapig123]

I have had 1 injection so far... Been very up and down with it, crying 1 min fine the next xx

[FazzyB]

Hi P,

I have stage 4 endro too, and it's been a roller coaster ride as I have had so much done from diagnose October 2017 till now,

What I would say is look at all your options,

If you don't have a coli in at the moment then maybe this is worth a try,

I am waiting for another MRI scan to see what is going on inside 🤔 as my last one was over two years ago, Might be worth asking for an MRI scan for your self to see what is happening with you?!?!?

But my only option I thought was full hysterectomy but not always the best choice, As this leads to other health issues and we are too young to be having a FH,

Did you know that not necessarily having a full hysterectomy will work,

It's important to understand all aspects of what can and will happen, Everyone is different and at different stages with this disease,

But keep in touch with your consultant and see what they recommend and what is the best treatment moving forward,

I pray you get some relief and that you don't suffer long term,

All the best good luck

X