Nicola Allan's story

After being investigated for abdominal pain since the age of 16, I was diagnosed with endometriosis on my third laparoscopy in 2002. I have been under a pain specialist for the past year for the endo pain, and would like to share my story and hopes with other sufferers as it has really helped me.

I was referred to a pain specialist by my doctor after we discussed my options. I decided to go down the pain management route as I felt I hadn’t made any progress with gynaecologists I’d seen.

I felt very nervous prior to my appointment with the pain specialist; if he was unable to help, I wouldn’t know where to turn next. It had got to a stage where my confidence in the whole endo situation was low, and I was at boiling point with frustration. I wrote a set of questions down the night before, so I would remember to get the information I needed – when I get nervous I tend to babble and then forget to ask questions!  

"I was at boiling point

with frustration"

I went to see the specialist at my local hospital, and he was fantastic. He disregarded my medical notes and listened to my side of the story, including what I had been through before I was diagnosed six years ago.  It was so refreshing to be asked how I was feeling, and to give a medical professional the full story of my medical problems. He wasn’t there to just talk about endo; he was there to get the bigger picture of the problems I was having. I told him that from the age of 16, I had problems with painful intercourse. I said that I was unable to have any form of a sexual relationship with my partner for the past three years because I had no form of sexual desire as it hurt every time I had intercourse - plus I was in agony for days afterwards. I explained that I had pain on a monthly basis, accompanied by migraines.

He explained all the options available to me, and that as a pain specialist, he could offer treatments that were not a cure for my ailments, but a way to control the pain. During the appointment, he examined my tummy and did a few needle tests. These involved him pressing different types of sharp objects gently on my tummy to see if I could feel them.  I had a patch on the right side of my tummy where I had little feeling during the needle touch test. The specialist came to the conclusion that surgery may have affected the nerve endings in the abdominal wall. He suggested that even though my endo had been burnt, the nerve endings were still active, hence the pain on a monthly basis.

My appointment lasted just over an hour and a half, and I didn’t feel like I was being rushed at all. I felt so happy that I was listened to and had a plan of action to help with my pain and conditions.

The treatment plan was to go onto a medication called Lofepramine; a type of anti-depressant. I wasn’t being treated for depression but the medication served as a painkiller because it blocks the pain

signals to the affected areas - I don’t fully understand the science of it all! I tried Lofepramine for a couple of months but saw no improvement in my migraines or endo pain, plus I was getting daily headaches.

I was then prescribed Gabapentin, which is a drug originally used to control seizures in epilepsy, but has been approved for the treatment of nerve pain. To start with, this medication made me feel drowsy and I worried about driving, so the dosage was altered slightly. The body does get used to the side effects in a couple of weeks but I decided to change my dosage to suit me as I do a long commute to work on a daily basis.  The Gabapentin worked wonders for me. It helps with the pain and the migraines I used to get every month. I still get the odd twinge, but nothing like before.

I was also put on the waiting list for a Superior Hypogastric Block procedure (SHB), which is an injection of local anaesthetic and steroid around the nerves that supply the organs of the pelvis. This all sounds very scary but believe me it doesn't hurt; if I was offered this years ago I would have had it done!

"I am now

a happy endo sufferer,

and am able to have

a pain-free sexual

relationahip again!"

I had to wait about six months for the procedure and had it done in January 2008. Since then, along with still taking the medication, I am able to have pain free sex and I very rarely get migraines or have endo pain. I am therefore dependent on the medication and will need to have the Superior Hypogastric block at least once or twice a year.

I am very pleased with my treatments and am waiting for a date this year to have another SHB. Over the past six years of coping with endo, I have tried all sorts such as the GNRH nasal spray, which included HRT and various other methods of pain management. I am now a very happy endo sufferer, as my working and social life isn’t affected and I am able to have a pain free sexual relationship again!