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Endometriosis and Pain - Help and advice please?

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Posted: Fri Jan 19, 2018 7:15am
2 replies34 views2 members subscribed
Pixie88

Posts: 1

Location: Adelaide

I need to ask for some help with something regarding Endometriosis and pain management.  I've been struggling with severe Endo since I was 15 (I'm now 31).  In that time I've had 5 laparoscopies, 3 miscarriages, undergone IVF and had a beautiful baby, almost died in childbirth and needed an emergency c section with hemorrhaging and blood transfusions, and an incredible amount of pain.  I've tried many different kinds of contraceptive pill to help and my body seems to react to them negatively in different ways.  I even ended up with hyperstimulated ovaries from the IVF injections! I was induced a bit early to have my baby and after 2 hours of pushing they realized she was transverse so not going anywhere.  I woke up in ICU the next day with tubes coming out of everywhere after being heavily sedated, with no idea if I'd even had a healthy baby.  From giving birth I learned that the pain I experience each month is as severe as labor pains.  Except that I actually preferred labor pains because they came in waves of contractions and had a clear end in sight.  My endo pain can last up to 2 weeks without the relief of it coming and going, and I have no idea how long it will last once it has set in.  Not to mention the ovulation pain I also experience, and then just general pain from scar tissue.  

Recently I was seen again in the gyno department and was requesting a hysterectomy.  They suggested I try a Marina first, which I have been doing.  It has been in for 2 months now, and so far I've had more consistent pain than usual... it has been really awful.  But I'm holding out for the 3-month mark because I've been told that is when it can start to improve.  Some have said they experienced the same thing as me for the first 3 months but after that it was incredible.  

My biggest fear is having to ride out any of this pain without the help of pain relief.  I have tried to do so in the past and I vomit, faint, can't get out of bed or function etc.  So far my pain relief regime has been Ponstan when it's not too bad, Ponstan and Panadine Extra when it is getting quite bad, and Ponstan with Panadine Forte when it's at its worst.  As a result of this, of course, I am very aware that my body has developed a dependence on the pain relief.  However, I'm not concerned about the side effects of stopping taking pain medication when I'm not experiencing my endo pain.  I have done this in the past and have found that anything I feel from that is way less intense than the endo pains, so I can handle that fine.  My concern though is that with the regulations about to change, once my pain is under control I may need to involve my doctor in helping with the process of weaning.  I am worried that if it is known and on record that I have needed to wean off Panadine then if the severe pain does return I will not be allowed access to this kind of pain relief.  I am genuinely quite scared of the prospect of ever having to deal with the pain I experience without the kind of pain relief I know helps.  Can someone please let me know if I do involve my doctor will this put some kind of "black mark" against my name for future pain relief if the pain does return? 

carolecurtis88

Fri Oct 5, 2018 7:13am

Posts: 2

Location: Surfers Paradise

Posted: Fri Oct 5, 2018 7:13am

Hi, I can't find any way of sending a private message to the member who so kindly wrote the article on the Pain and Suffering of Endometriosis, therefore would you please remove my email address before posting this message.

My daughter has had endometriosis for over 2 years now yet my GP is unable to get a reply from the Gold Coast University Hospital for her to visit a specialist.  She is 40 yrs old, can't work for the constant pain, suffering and vomiting.

Despite not being examined by anyone at the Gold Coast Hospital she has been placed on level three waitlist. 

Can anyone tell us how to get the attention of the hospital, even though her G.P marks his correspondence as URGENT,

Yours sincerely,

Carole Curtis

carolecurtis88

Fri Oct 5, 2018 7:30am

Posts: 2

Location: Surfers Paradise

Posted: Fri Oct 5, 2018 7:30am

Hi, I can't find any way of sending a private message to the member who so kindly wrote the article on the Pain and Suffering of Endometriosis, therefore would you please remove my email address before posting this message.

My daughter has had endometriosis for over 2 years now yet my GP is unable to get a reply from the Gold Coast University Hospital for her to visit a specialist.  She is 40 yrs old, can't work for the constant pain, suffering and vomiting.

Despite not being examined by anyone at the Gold Coast Hospital she has been placed on level three waitlist. 

Can anyone tell us how to get the attention of the hospital, even though her G.P marks his correspondence as URGENT,

Yours sincerely,

Carole Curtis

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