With this post, I guess I'm just hoping for a little support. And maybe hoping this "episode" will let others know this endo thing does get a little better.
I have endo stage IV, and am awaiting the results of an MRI scan following my diagnostic lap (where the stage was identified). I have an appointment in 2 weeks with a colorectal surgeon, and an appointment in 4 weeks with the gynaecology surgeon (they are colleagues at a BSGE endo centre).
While waiting, I'm on decapeptyl for chemical menopause with tibolone HRT add-back, duloxetine for neuropathic pain & mood, and declofenac as anti-inflammatory.
So, that's really the best I can do to cover the bases.
On the plus side:
- Discovered crochet is good to relax and take my mind of worries
- Arranged slightly reduced work hours for a month while getting used to new meds
- Starting to be able to clean house again, a bit at a time (the deep dust built up after the lap, and I've had fatigue since)
On the down side:
- I'm basically obsessively worrying about what type of surgery might be recommended to me. I'm really anxious.
- The fatigue is real, and still there
- My ability to focus and concentrate is low
- I worry that I'm actually just a lazy person and that's why I struggle with fatigue and focus (even though that doesn't match my personality).
So, it sounds so strange, but even though things are better now than back when I visited A&E for endo pain a couple of months ago, I feel ineffective and am doubting myself.
So, this really is an improvement compared to before - yay! But, it's still a slog - boo, hiss! 😉
You are right it is a long slog and one that never seems to end.
I also have severe fatigue, suffer with fibromyalgia too which doesn’t make it any easier.
I am on decepeptyl injection too. How is it helping your symptoms? Still waiting to get HRT and this is week 5, suffering hot flushes which come on all of a sudden it’s horrible.
Hi Glitter,Shucks - having fibromyalgia along with endo is not a good combination.
I had my first decapeptyl injection 1.5 weeks ago, and started the tibolone the same day.
The first day after was basically a flare-up with a burning sensation in the lower abdomen. Since then, it's been ok with no burning some days, but then the burning sensation returns other days. I associate that burning feeling with endo pain that happens at period time. They say that right after the injection, the body releases estrogen, before it stops. So, I imagine that explains the flare-up. I'm hoping by the time the first two weeks have ended, it will become easier.
I think the tibolone helps because I haven't had the menopause symptoms - hot flashes, sweating. I have been more likely to wake up at night, but I love sleeping, so can usually go back to sleep again ok.
I was keen to have the tibolone because it helps to reduce the risk of bone density loss and osteopetrosis.
That’s good, the injection does get better, I am now on the 2nd one. The first week was horrendous, heavy bleeding and up and down at night. Settled down now. They were meant to give me HRT when I started it 5 weeks ago but the gynaecologist didn’t put that in her letter so I now have to wait until my doctor gets a response from her as to which one to put me on. So fed up of it! Why can’t they give me some right now. It’s not them having these awful symptoms.Like you I love to sleep too. Often get 12/13 hours sleep a night then still not refreshed. Is that the same for you?
I think it’s the fibromyalgia which makes me sleep for hours on end x
Hi Glitter,I think I sleep for about 7.5 to 8 hrs at night. But then lately because of endo fatigue, I've often added a 1hr heavy nap when I stop working in the early evening (the kind of deep sleep nap where you wake up and don't know what day it is, or if it's the evening or morning). And... In the evening between household chores... I admit I go to lie down/recline to crochet in a comfy "pillow nest" in bed because I find that somewhat restorative. I just don't have the energy to be up and about all evening right now. Before lockdown and endo, I could easily spend the entire evening in a dance class and then a practice session. It's a huge contrast!
I'd take a wild guess that needing 12 or 13 hours of sleep at night might be from the combined affects of fibromyalgia plus endo together - I suspect these things may be cumulative.
Well...you’ve got a horrid disease (very sorry and so have I) and are doing exceptionally well, given the awful circumstances of your health.
Your body has carried you through your life and with the Endo and it needs a rest. A huge adjustment is needed to find your omph again. Sod the dusting and you don’t sound at all like a lazy person. This is sounding all familiar and normal to me. The frustrating thing is waiting for the treatment but you’ve got this! We are here for you sweet lady 💖
I am laid in a nest of pillows in my gym kit. After group therapy online....my blood sugar dropped and I had a sandwich. To find the heaviest and gross-ist period bleeding ever in my life!! 😩🤢🥴
Didn’t make yoga 🧘♀️ sod it!
Having had Mirena coils in since my lap in 2007, the last one came out yesterday and since my vagina feels better, more comfortable but I feel so ill!! Awaiting MRI and on list for a full hysterectomy.
Going to listen to a book and stay where I am. Sod everything else and I can no longer work and have been weeks without income/waiting to hear about my benefit claim.
I had some cold vanilla custard for comfort from my food parcel 🥲🤦🏻♀️
This is horrifying to me...I feel so ashamed, my pride and ego are going......
I have a crochet kit to play with...can’t manage that today though!
Waiting for a hysterectomy at 45, never been pregnant and gutted but glad to be alive.
Big love and we are all in this together! Let us know how you’re doing and let’s keep talking x
This all sounds so familiar. It's so easy to beat yourself up and feel you're just lazy when you're not. Try to just listen to your body and rest and enjoy your crochet. I also so crochet and knitting! It's the best possible hobby for endometriosis I think, you can put your feet up and get lost in it.
“My ability to focus and concentrate is low” “I worry that I am actually a lazy person “- totally me at work and pretty much every day lol. My house is a chronic mess. But I clean heavy on an energy day. The day or two each month that I actually have energy to clean I’m practically manic, but I realize that’s how “normal” people my age are. They have energy every day. I also forget things at work and in personal life to the point it does effect my job. Hope it doesn’t get worse. I realize now after struggling for 8+ years with this disease (stage 4 endo) I need to give myself a huge rest. Like other posters said, just to let our bodies adjust to this disease. We are not lazy. I WANT to do things. I just don’t have the physical or mental energy. I am on citalopram for medical induced depression and it helps tremendously but I’m still fatigued by endo. I still struggle with being kind to myself but I’m trying and this post and other responses helped me a lot too. Just want you to know you are not alone with these thoughts and struggles.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Should I cancel first lap with general surgeon and wait to see endo specialist?
What should I do next?
Constant bleeding - should I ask for deeper tests?
Hysterectomy- should I keep my ovaries?
Should I get a private MRI?
