Can endo "dry out" during hormonal treatment?

[LucieH]

Hi,

I go to a gynaecologist privately and last november I went to see her with severe pain in my left side. She found a 5x6 endometrial cyst, and all my other long-term symptoms (bowel symptoms, pain and inflammation during period etc.) pointed to endometriosis. Now, because I have the cyst, I don't need a lap for diagnosis, since the gynae could see on the ultrasound that the cyst is endometrial. I know you can't see endo on ultrasound but the dr and a specialist in a hospital both said the cyst is filled with blood so definitely endo.

Because I already have a diagnosis, the dr's are avoiding surgery and I was given combination pill to shrink the cyst. I told my gynae I was worried about endo tissue elsewhere in my abdomen and told her I can't know how far the endo has spread without laparoscopy. She told me not to worry, because with the pill we'll stop my cycle and if I don't bleed, the endo will "dry out". You probably understand that as a person who has endometriosis I have my doubts about what doctors tell me. We've all been through stuff with doctors. So I want to ask if any of you has been able to manage endo with the pill only. So far, the pill has been helping me, the pain is almost gone, I don't even have to take any painkillers! But I'm not so sure if the pill can actually shrink a 5x6cm cyst and dry endometrial tissue. Does this mean, if I stop my period with the pill, endo tissue won't bleed anymore and the excess blood I might already have around endo tissue will just dry?

[Shehulk]

Hi Lucie, I was on the pill for 15 years and did not have any symptoms, I didn't even know I had endo. Once I stopped the pill, pain started with a vengeance, in less than 6 months I was in pain constantly and had developed 2 large cysts. When I had surgery the consultant told me that my endo had been growing for years while on the pill. Pill can improve your symptoms and maybe slow down the progress but will not "dry it out" or cure it. The only effective treatment of endo is excision surgery, hormonal treatments will help with the symptoms but will not get rid of the disease. So while it is good that the pill is helping with your symptoms, it is also important that you know that it is not a cure so you can make the best decision for yourself moving forward. Best of luck xxx

[LucieH in reply to Shehulk]

thanks, that's exactly what I thought, too. the problem is that my doctors agree that I don't need a laparoscopy because the pill is helping remove the symptoms. I had terrible pains and symptoms when I was around 15-16 yo and the doctor I had back then never took me seriously and said I had trapped gas when I complained about sharp pain and having to skip school because of it. I was given the pill to deal with period pain though and that's when the worst pains stopped. Came back a year after I stopped taking the pill and went when I started taking it again. So I know it helps dealing with the symptoms but my doctors don't seem to share my concern about what the endometriosis is doing while I just cover the symptoms and don't deal with what caused them! They are right about one thing - endometriosis cannot be cured and if there's endo tissue around some difficult spots they won't be able to remove it anyway. And it comes back at some point later. So they don't want to perform any unnecessary surgery. My gynaecologist said if they remove the cyst, they might have to take the whole ovary. So there we go again, the never ending dilemma between trusting the doctors and feeling they're probably wrong.

[Shehulk in reply to LucieH]

Hi Lucy, I understand how you feel it is important to do your on research, I always found that being informed made me feel more in control. In my experience most endo can be removed if the surgeon has enough expertise. Most of the times a surgeon says that some endo cannot be operated, they just mean that they cannot do it themselves, not that it can be done. I have larger cyst on both ovaries , almost 10cm each and they were removed without having to remove my ovaries. Are you being treated at an specialist centre? X

[LucieH in reply to Shehulk]

I live in Finland and we don't have an endo specialist centre here, I am treated at the university's teaching hospital, at their gynaecology centre. My consultant is very young, but she did check in with a senior consultant and asked for a second opinion. The way my doctors keep saying "every surgery is a risk, even if it's just a laparoscopy" and "we don't want to do anything invasive" just makes it sound like they don't know that much about removing endometriosis. I have a check up at the hospital in march to see if the cyst is still as big, and if they consider laparoscopy, I am going to have to be a little unpleasant and ask if they have a specialist who is experienced in endometriosis treatment. I wouldn't want someone who doesn't know what they're doing!