Help me find Visanne or equivalent in UK. Endo in C-section scar

[Jagah]

I'm 29 years old, 6 years ago I had an emergency C-section on 32 week of pregnancy, complicated by pre-eclampsia. Everything was perfect until 1,5 year later I started to feel regular pain, with high intensity right before period, and during it. Pain was extremely painful when I sneezed or coughed I could feel pulsing pain. I was constantly on painkillers. My stomach would bloat and I used to tie rope around my hips just to keep pressure on the painful spot. It would ease the pain a little. I would massage myself at that spot, around C-section scar to relieve the pain.

My first doctors never mentioned endometriosis, I didn't even know what it was until I traveled to different country for diagnosis and had my removal surgery, last one. During my first laparotomy surgeons removed bits of surgical suture, and concluded that these were causing my pain and inflammation. I thought it was over by then, but pain came back with the next period. The pain was so severe that I was ready to do anything. This time doctors bet on adhesions, I was convinced of that diagnosis. My second surgery was laparoscopy to remove adhesion. Doctors did found some and removed them but the story didn't end there. After 4 years since C-section I was again at the beginning, with the same chronic pain.

Luckily I stumbled upon great doctor, who after listening to my symptoms without hesitation diagnosed that it might be endometriosis but in abdominal area, in scar not in pelvic. That is why I didn't share general endometriosis symptoms, like painful intercourse or toughened uterus and gynecologists have always sent me home with "everything is alright" . The same doctor performed surgery and removed a big chunk of brownish substance. Hysto-pathological examination confirmed existence of endometrium elements. After surgery I was put on Visanne(Dienogest) for 8 months, during that time my pain was literally non-existence. I couldn't believe that I was finally healthy, I could jump , run , live…. until my treatment with Visanne was over and pain came back as if nothing had happened.

Now I live in UK, I really wish to go back on Visanne or equivalent substitute. I know that it is starting to grow again, it’s just matter of time until it reaches previous size. I don’t want to end up on table again. Visanne is not available in UK, for the last 6 months I am trying to find substitute with no effect. Mostly I spent most of my time on waiting for appointments, referrals. Doctors I’ve met here are terrible, one of them claimed that I don't have endometriosis and put me on regular contraceptive pill, which is too weak. If that's possible I could take Visanne forever, but I heard it might eventually cause osteoporosis and its side effects are quite annoying such as mood swings or depression. After 6 years, 3 surgeries and endless searching for continuous treatment I am just tired. Can anyone help me find Visanne or equally effective medication. There is one option to purchase it online, for 23 GBP. I am not sure what to do, I can’t rely on doctors here, it took them 3 month to prescribe me one useless contraceptive pill. I am thinking of getting hold of Visanne no matter what and going back on it without medical consultation. I read on blogs that some people took it for 2 years. I could just hope that this time If I take Visanne for at least 1 year, the whole endometrium in my scar dries out and never grows again. Is that possible? Or this condition is permanent? And there is no full-recovery?

[Breadmouse]

Hi. I have endometriosis in my c section/lap scar. For about a year I thought it was my pants rubbing my scar. Every month the lower area swelled and was extremely painful for 2 weeks. I can feel a nodule around the scar. My GP said you can have surgery to remove it but gave me option of using progesterone only pill instead. I take desogestrel 75mg. It took about a year for effects to be complete but I don't get periods at all and no problems from scar endo. I feel very lucky that it has been controlled so easily. If you do a Google search it seems you can have it removed surgically. Good luck

[Jagah in reply to Breadmouse]

Thanks, I already had it removed once. I just don't wanna be doing it regularly.  I wish there was a long-term treatment with no side effects. 

[mariamamaria]

Hi darling,

I am on 4th stage of endometriosis, 2 surgerys, only one ovary left, so I know what you are talking about. I am on Visanne since 1 year, and it really took my pain away. I am living in UK also, and I buy it online each month. An alternative it's to take a cheap flight in Greece, Athens and to buy many packs from any pharmacy there. You have to order it on the pharmacy and it brings you the pills in few hours in the same location that you order it. Good luck and if you want to keep in touch e mail me on [e-mail]

[Hidden in reply to mariamamaria]

Hi Mariam Maria,

It's been a few years since your post. Is Visanne still working for you? And are you still able to order it online in the UK?

Just curious about the option.

[mmarie]

I understand your despair in trying to find Visanne. However, it is available in most other countries of the EU. Perhaps quite costly €40 per month I think. You'd need to have a prescription from a doctor in that country and then you could buy it in the pharmacy there. Maybe it's worth taking a little vacation outside of the UK?

As for the endometriosis growing back, everyone is different but I think one of the biggest factors that makes it keep growing is stress. 

Good luck finding the right treatment for you! I'm sure it's out there