Endometriosis as the most recent gynecological diagnosis.

[sj_is_charmed]

Like many of you, I have been suffering issues of a female nature for a long time. Mine started when I was 14, when my periods came every two weeks for two weeks and were excruciatingly painful and heavy. So painful, I would pass out from a combination of reduced blood pressure and pain. A trip the the GP with every cycle resulted in the GP advising me of my overuse of the service as I was just having 'normal teenage issues'. One day, whilst at school, I passed out and because of policy they sent me to A&E, who did an ultrasound because they thought my kidney's were failing: it turns out I had a 10cm cyst sitting on it. An instant referral meant that within weeks I was preparing for a hysterectomy because it was thought that the cysts was wrapped around the womb. A laparotomy later and I was free of my cyst and apparently still with all my reproductive organs: they didn't need to do a hysterectomy. They discharged me, sent me on my way insisting I would be more likely to win the lottery than have another cyst.

Would you believe, 6 weeks later I was admitted to hospital with suspected appendicitis with a final diagnosis of a hemorrhagic cysts (5cms)? Well this is what happened! This was treated using the contraceptive pill which got rid of the cyst. But they kept coming back whilst on the pill and causing pain. Another laparotomy to remove another one, and to detach my womb from the muscle wall of my abdomen gave me some relief for a few years whilst on cerazette to seize the periods. However, this stopped working and whilst on it back to back, I started having periods that induced vomiting for 3 days. In the times in between, I suffered lots of pain and discomfort but had resigned to the idea of this being life long and learned to live with it, including bowel and lower abdomen pain. So a laparoscopy was done, my ovary was attached to my bowel, during the surgery to separate them they pierced my bowel and I was in hospital for 10days. They also advised me that I had no Fallopian tube on the right side, it had been removed previously, This was the first I had learned of this. So they double the dose of cerazzete which brings comfort for a while, but then stops being effective. Back to the consultant. More cysts, this time 3 on one ovary, complex in nature and possible endometriosis. I ask to have the ovary removed, since it wasn't attached to me womb, I was refused and medical treatment was given. Hello prostap. Effective and scan shows no abnormalities. So, the consultant removes all treatment fore 6 months. What ensued was horrendous, sickness and diarrhea with ovulation and period for 3 days at a time, more pain than I could describe and just a sense of giving up. Back to the hospital, apparently it is the prostaglandins that cause the sickness and diarrhea, nothing they can do but stop the periods, so I am put on the Evra patch, stops the periods but still having a lot of pain. Welcome operation number , diagnosis: chocolate cysts and severe endometriosis. In some respects I am grateful to have a diagnosis that is long term in nature rather than recurrent ovarian cysts. However, they left my ovary that isn't connected to the womb and I am angry. Especially when the consultant advised to continue with Evra patch to stop periods: I have been bleeding for 4 weeks straight now, which most definitely isn't helping the endo.

This will be hard for some people to hear, but I have considered a hysterectomy because the impact this has on my life is huge. But for now, I continue to suffer and wait for the next treatment option. Despite approximately 50 scans, the left ovary has never shown signs of ovulation, so they fear it doesn't work, which is why they wont remove the right, but realistically, given that it isn't connected to my womb, I wouldn't conceive naturally and thus IVF would be the only option. My body doesn't seem to like the female hormones I already have, particularly not estrogen so I do not believe that I would ever chose to have IVF.

Through it all, I have found the health service less than useful, informative or supportive and I feel incredibly let down.

[Jillanovitch]

So sorry to hear your story, all the pain & suffering. The negativity & comments like its normal teenage issues must have been awful, I have had very similar issues. Vowel, uretha, womb, bladder all stuck to the back of my womb, cysts on my ovaries. I've had a full hysterectomy & now because all the endo hasn't been removed I am certain the endo is on my bladder & bowel, the bloating, pain etc is incredible at times. I've had this since I was 14 I'm now 46, drs tell me because I'm going through the change this shouldn't be happening, well it is, I have good days & bad days. I keep smiling cos I have to. Reading other stories & knowing I'm not alone has helped me enormously. I hope this helps too, one day endometriosis will be recognised for the disease it is. Your right the health service is useless. I'd find out if a hysterectomy will cure you it didn't me! And as to hearing your considering one isn't hard to hear I've suffered the pain too & still do. Sending a big hug x

[sj_is_charmed]

Thanks for your lovely comment. I am ten days post latest laparoscopy and in more pain than I had immediately before. I am waiting to see how it goes, but given that my surgeon is a urologist and seems to have no sympathy I am ready to find a endometriosis specialist. The stories I read on here have helped immensely: previously, I thought I was alone, I thought I must be the only one going through this otherwise there would be a better support system in place. But ironically, the opposite has happened. I am doing a doctorate in patient safety in healthcare, the premise of my work is that patients perceive safety with greater relation to their disease, and promote the concept of psychological and emotional safety. I get it, not all diseases have cures or sufficient treatment options available; but what is essential is that doctors communicate this with us so we can be informed and plan better. I find it extremely frustrating when doctors patronise me and fear the extent to which they do this with others.

Your kind and sympathetic words comfort me greatly and I have found great solace in them. There is no Endo UK group in Birmingham where Iive so I have applied to run one with the charity.

[eva_k]

Dear sj_is_charmed,

I just read your story and I must admit I was totally touched by it. I am an endometriosis sufferer too, and after years of pain and being let down by the NHS I have decided to take matters in to my own hands. I started looking into having treatment abroad and I found a website called medigo.com, where they list loads of different gynecology clinics around the world, with one in particular in the United Arab Emirates that specializes in endometriosis treatment. I got so fed up of the ridiculous waiting times and being shuffled from doctor to doctor, to no avail. Now I am considering combining the treatment with a trip to Dubai, as the holiday of a lifetime - I feel like I deserve it after the time I have had lately.

Anyway, I just thought my story might help you out a bit too.

I wish you the best of luck and I hope you have found a solution already, or at least will in the very near future.

Best wishes!

[sj_is_charmed in reply to eva_k]

Hi there eva_k

I am sorry to hear you have also had a difficult time. We are not alone and our stories are more frequent than they should be. I have since found a solution which seems to be working currently. I have changed my care to a specialist accredited center and the atmosphere and care I have received has been infinitely better. You can find a list of them here bsge.org.uk/ec-BSGE-accredi.... It is your right to be treated anywhere you see fit so ask to be referred and give that a go. And save your holiday of a lifetime for a time when you are not worrying about a laparoscopy and other treatment at the end of it xx