Anyone else have chronic pain that has limited your ability to travel in a car or even leave the house for long period of time??

[Lejay]

Question and long rant.

I am struggling big time with chronic pain, mostly nerve pain but also ovary pain around ovulation and period weeks. I had my lap about 14 weeks ago that diagnosed and removed an extensive amount of endo and i have been on Visanne since then that has stopped my period bleeding but i still get the pain.

I have been trialling pain medications but i still haven't found one that works or doesn't give me bad side effects. I have another appointment with gp next week to trial another medication that is known to help nerve pain. Anyone heard of Endep?

Since I have been unable to work and I don't have a car anymore, I have been housebound mostly since a month before my op. Luckily my boyfriend lives 5 mins away from me (I am living with my parents), so I can stay over his place sometimes when he isnt working away. That and mostly visit my sister (7mins drive), gyno (12mins) and gp (5mins).

As time goes on and the pain continues, I find myself getting increasingly frustrated at myself and have been very moody and down (hormones aren't helping this).

I actually braved the shops and went to pick a bed with my partner last weekend (it had been delayed for 4 months due to my decreasing health) while trialing another pain med. Within 10 mins of being there I almost passed out and had to push myself to stay awake and had to ask to use the staff toilets with the excuse of "I don't feel well", which was half true. The other half of the truth was i had just started ovulating and the ovulation/ovary pain had set off worse nerve pain that irritated my bladder and I was about to burst. Side note: I had endo on my bladder which I was hoping they fixed but I am still dealing with an overactive bladder that catches me out in the worse times and places! I was in tears when I got home, from anger at myself and pain. Then the rest of the weekend i was fighting through painful med side effects. The only good thing was we managed to choose a bed haha.

I am studying online, so i keep myself occupied and busy at home or at my partners place, whatever I can do around the house (slowly and with a heat pack attached to me). But the fact that I've lost my independence has become a big issue for me. Not only have i lost a car but i have to rely on others to go to the shops for me, i order what i can online but only the necessities as I am on a budget. I've gotten used to asking people to lift and move heavy stuff for me now but still hate asking.

Within the space of about 6 months my health declined rapidly and my pain increased. So 1-2 months before my lap and diagnosis, I could barely walk due to pain.

Im not saying i havent improved now, i have improved in some ways with some symptoms and pains. I have been having more good days than last month (not as much as I'd like) and longer hours of being able to do simple things i wasnt able to do before like lift a basket of towels. But improvement hasn't been enough to be able to not have a heat pack attached to me constantly and be able to walk and/or stand up for a certain amount of time without pains and being close to passing out. Also, hardly any sleep.

I feel like a burden and I definitely don't feel or am not acting like my old normal self. I really miss my old calm, independent, laid-back, very patient, happy, adventurous and funny self. And I really worry how I am now is affecting my relationships and my unknown future if my pain doesn't improve soon 😥

Most of all I am starting to worry more about money and how I will work.

Thanks for reading this far if you made it haha.

[Felma]

I think if you can tolerate Dienogest 2mg a day wherever the endometriosis is the pain will also subside. Is there any other cause for the pain? Any urine infection?

[Lejay in reply to Felma]

That's what my gyno told me but I'm supposed to be on it until November I think and it hasn't improved my ovulation and period pains yet. But I was thinking if the pain (ovary and nerve) is like this now while I am still healing, I can't imagine how much more severe my pain will be when I come off the Visanne. I think I am supposed to go back on a normal contraceptive pill after but the transition for my body will be hell, especially as I've had trouble in the past with the pill. Not looking forward to that!

Not that I know of. Mostly just nerve pain, which my gyno warned me about. But I mentioned to a GP last week about my inflammation of my left pelvic area (most operated on) during ovulation and period times with endo-type pain but he didn't say much. He just seemed to think it was normal for my situation because I must still be healing and my lap was extensive (also both tubes were blocked and an ovary stuck so they think it been awhile since they've been able to work properly). I don't have symptoms of a urinary infection. I keep thinking they must have missed some endo on my bladder because my bladder issues haven't improved. I had endo on my bowel too and those symptoms have improved big time since the op!

I don't know if I should ask this other GP next week if i should have a blood test to check for infection?

[Lejay in reply to Lejay]

Although I'm not showing normal signs of infection...

[Felma in reply to Lejay]

The recent treatment guidelines dint support resection of endometriosis on bowel and bladder. May be you could be on Visanne for a longer time. How old are you?

Adhesions also cause significant pain.

I took Visanne for two and a half years . I know it causes side effects.But itbis a much better treatment than contraceptive pills .

[Lejay in reply to Felma]

It was the burning off technique they did on my bladder and bowel I think, I forgot what it is called.

I was thinking about asking that but my gyno said ony 6 months. I'm 31. I don't know much about long term side effects on being on Visanne for long but there has to be a reason why my gyno only prescribed it for 6 months for me.

Yes I was thinking of adhesions too as a possible cause. Do you know how they find out if I would have adhesions?

I am dealing with some side of effects from Visanne, now it's mostly menopausal symptoms like hot flushes and also very moody. I might talk to the GP about the risks of staying on Visanne for maybe another 6 months and if it's possible or not.

[Felma in reply to Lejay]

Diathermy. I am both a gynaecologist and a patient.