At a crossroad with treatment

Hi,

Like many of the stories I have read on here mine has been an on-going battle with pain, hospital visits, scans and operations.

I was diagnosed in 2009 with endometriosis and had my first laparoscopy in 2010. At the time my main concern was having a baby (I already have one child who is now 9), as I had been trying for several years with no success. My periods were excruciating but the pain was only at its peak for the first day of my cycle and then I would be relatively pain-free for the rest of the time.

During the lap adhesions were lasered away and my periods improved for approximately 6 months and then the symptoms retuned with a vengeance. I experienced pain all the time and the pain during my periods was unbearable. I could not function and was on pain killers all the time.

I had my second lap in March 2012, where an ovarian cyst and more adhesions were removed. The pain came back after 3 months.

My husband and I decided together that we would rather enjoy the child we have than to keep trying for anther baby and for me to be in constant pain. I tried the contraceptive pill, but after a few months I became very depressed (a symptom I had experienced before with oral contraceptives), and so the Mirena coil was fitted in December 2012.

At first the Mirena caused me to flood for a bout 2-3 weeks and then calmed down. The Mirena has reduced the pain during my periods slightly and the bleeding is less, but I am bleeding for 2-3 weeks of my cycle. However, I now have cysts on my ovaries causing me pain, and more endo has come back. It is awful if I try and exercise (I love to Zumba!). I am now on pain killers most of the time (declofenic, co-codamol and acupan) and I saw my gynae again today to work out what to do next.

My gynae said that he does not advise a hysterectomy ( I am only 33), and said that being on HRT for a long time would put me at risk of developing cancer of having a stroke. He has suggested Zoladex injections, but I am unsure if this is a long-term solution as the info I have read says that I can only have it for 6 months. The side effects don't sound great either. My gynae says that my cysts (1 x simple and 1 x endometrioma) will go on their own, but there is no sign of that yet.

I am asking to be referred to another hospital for a second opinion as I am not sure how reliable my consultant is. He does not seem to take my symptoms very seriously and spends most of his time talking to my husband instead of me (?!).

I do not want a hysterectomy unless absolutely necessary, and as my sister had cervical cancer and my mum died of ovarian cancer I am concerned about increasing my risk of getting cancer.

Anyone's thoughts or experiences would be greatly received. I feel like I have been going round in circles for years now (and I know some of you have been dealing with this for many more years than me).

Thank you for reading x

1 Reply

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  • Hiya im 36 n unlike u I have never had children and to be fair I think my time has fine.going in for another opp to remove endometrios in a week n then unsure what's going to happen then.wanted to say that 9yrs back I had same opp and was followed by zoledex injections.was nice the hot flushed but after so much pain it felt like a walk in the park.a couple of months after finishing those I became pregnant.unfortunately I missed carried but what I wanted to say is give it one last go n have the injections,the pain didn't improve a lot after and u never know it could kick start ur hormones n could fall pregnant.I think nothing to lose by one last try.xxx

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