Feeling Unwell

[Natcamb]

Hey, I just wondered if anyone's Endometriosis became so bad before any treatment that they just felt ill on a daily basis? I've had lots of thorough investigations over the years, and the only diagnosis was Endometriosis in 2015. I had a colonoscopy and MRI last year. My recent blood test came back all fine. I haven't had a laparoscopy since 2015, so I'm thinking the Endometriosis may have spread a lot, and is making me poorly. There wasn't that much on my first lap, but I've heard it can spread very quickly.

[AliceVictoria]

Sorry to hear you're feeling so ill! I found I was feeling constantly 'under the weather' before I went back for my recent laparoscopy and they had found my Endometriosis had returned since my last laparoscopy in 2015. I felt like I was only feeling myself 1 week out of every month and even then I was bloated still and lethargic. It was really hard for me to put my finger on some of the symptoms and I ended up going to my GP even though I had a consultant gynae appointment booked. I think it's normal if you're body is going through something to sort of shut down a little bit, not sure if other people have found that too!

Hope you feel better soon!

[Ash24601]

I have symptoms every day. I heard endo secretes it’s own hormones so it can be active throughout the month, it can also depend on the location.

[AllthatGlitters]

I sometimes feel like I am not quite with it, it’s hard to explain. I can feel great for a few days then wake up feeling utterly hellish & there is no warning either x

[vmagpie]

Hi, sorry you’re struggling so much.

Recently I had about five weeks of constantly being in pain or severe discomfort and feeling very unwell. I couldn’t work or do my normal daily stuff. I thought it would never end. I went to hospital at one point and thankfully that resulted in bringing forward some of my recent appointments and investigations. Seen a gynaecologist and had ultrasounds, bloods and an mri.

The symptoms, pain and ill feeling just faded back into my normal cycle. It’s bad but not constant.

I hope yours eases up and you get some relief.

All the best x

[Endo_This]

Yes, I got to the point where I was feeling ill every single day. It was difficult to explain to my husband/friends without sounding like a hypochondriac. I felt nauseous, lethargic, achy, dizzy, had headaches, massively bloated, dull ache in my abdomen and just generally felt pretty rubbish all day everyday. This then made me quite anxious and depressed so was a downwards spiral really.

It’s obviously important to rule out other things but I had lots of blood tests and always came back fine.

Was your endometriosis completely excised in 2015?

[BBBOA]

I am sure that endometriosis has an impact on how you feel and hormones. I've had a full hysterectomy, 18 months ago, and I am convinced that I am still getting cyclical issues, especially severe pmt. Weird I know as shouldn't be anything left, but my pain/mood diary does not lie. I recommend keeping one and checking whether particularly bad spells match up month on month . I'm having another laparoscopy to see if something got left behind! Hope you feel better soon.

[HannahElsie]

Sorry to hear you feel unwell. I have symptoms every day, and at the moment am struggling with feeling really down about it which is adding to everything. The only thing I can say is be kind to yourself. Allow yourself time and space if you are feeling rubbish and try not to feel guilty about it. I’m on painkillers daily and I’m trying to bust out of this bad cycle with a positive mental attitude (far easier said than done but I’m in a slump and need out!) Hope you start to feel better soon

[Jolt]

I'm at that stage of having symptoms daily and feeling generally awful too. Very worried Endo has grown & spread, but got another few weeks to wait for an ultrasound, then referral to consultant.

I am trying to take it easy, do what I can and not worry about it too much...but it is very frustrating and easier said than done!

Hope you are feeling better soon x

[Natcamb]

Thank you so much ladies. You're all very kind and this is very helpful. I'm sorry to hear what you've all been/going through too. Endo_This I've got the same symptoms as you at the moment. It seems to have built up and got worse this year. It is so hard to make others understand. AliceVictoria I've also been going back to my GP with my symptoms even though I've got a referral. Like some of you mentioned it makes you anxious and feel down. I was worried about what else it might be, but have been reassured by Doctors about the very thorough testing I've had, so it should not be anything serious. Seeking some help on here has been a very good idea. It seems like Endo is such a beast of a disease. My whole pelvic region at the moment feels like a complete mess, sorry to say, but also including my rectal area. I'm also getting pain and numbness down my legs. HannahElsie, I've also had to resort to daily painkillers now, hope things might improve after a laparoscopy. BBBOA, I think I need to start keeping symptoms diary, as I might find a pattern. I noticed a strong pattern when I was off the contraceptive pill, but not so much afterwards. My periods were just starting to get worse again on the combined pill two years after the lap, and then I got put on the minipill- it's stopped my bleeding, but not my symptoms. Vmagpie, and AllthatGlitters, I know what you mean, I wake up some days feeling awful, and finding it hard to do my daily activities. Thanks Ash24601, I've always found it hard to understand why Endo can make you feel ill all month round. Even when the symptoms were not too bad I had a constant dull pain in the right side of my abdomen and lower back all month round. I'm not sure if all Endo was excised on the laparoscopy. The previous hospital I was at was not very good, and they didn't seem to even know basic things about Endometriosis, and then I was discharged. I live an hour from Cambridge, and I'm at Cambridge University hospital now. The Endometriosis clinic has been very supportive there. I will be seeing a gynaecologist there soon. Stay strong ladies, and thanks so much again x

[vixstar84]

Hi ladies, I totally understand and feel exactly the same. I honestly believe it's down to hormones. I feel horrendous daily - have about 4 days a month where I don't and rest of time I'm housebound often bedridden - had 3 surgeries last year with excision specialist and hysterectomy in mArch but kept ovaries. Pain has improved, still get it a bit, but feel ill on a day to day basis, severe PMS, digestive issues, migraines and feels like my body is malfunctioning without sounding too drastic! I actually felt better on Prostap and worse since my ovaries seem to be working. I also keep wondering if endo has been missed esp as I know some was missed between 2nd and 4th op but I do trust my surgeon - it messes with your head though! My hormonal and general unwell feeling actually started before the pain kicked in about 18 months ago.

All my bloods have come back normal but I have noticed my thyroid levels have changed a lot in the last few months so looking into this and hormones as really don't want another surgery! Good luck to all of you, it's horrible feeling like this but we will all get there though I've been saying that for 18 months! X