Being sent to home country because too sick? Help, please!

[emilyt03]

I have suffered from severe chronic pain for almost 10 years. And I am only 22. Right now I am in medically induced menopause (Zoladex injections) in an attempt to clear up what my specialist believes is endometriosis. In the last 18 months, I have had little or no quality of life. I am vomiting constantly, always getting bugs and infections, always in severe, unrelenting pain, emotionally drained, anxious and depressed, so terribly fatigued, just to mention a few. Here's a bit about my history with endo:

-I have had two laparoscopies at home. One was with a very terrible doctor and it is actually questionable if there was a surgery performed. The second was with a doctor who I trust a reasonable amount. After surgery he told me that he found "a little bit of endo, probably not even stage 1, not enough to cause your pain." At this time, I had no idea that the amount of endo does not relate to the amount of pain.

-Now am in the UK, have been on Zoladex injections for two months, and it is HELL. I have been in bed for all but about 2 weeks in the last two months. I've spoken with someone from EndoUK who said that some people cannot tolerate Zoladex. Any experiences??

-My specialist in the UK also thinks that I have adenomyosis (like endo but confined to the uterus).

-I have been on about 10 different birth control pills, the coil/IUD, the implant, and nothing. Nothing so far has worked. I have also seen a neurologist and psychologist to be sure that this pain isn't something else.

-I have basically every symptom of endo imaginable, but I don't have cysts that appear on ultrasounds. I don't have any lesions that show up on an MRI.

When I get home, I think that I will most likely be in for another surgery. I am TERRIFED that they won't find anything. At this point, I need a diagnosis. I can't let this rule my life any longer. I'm a student at the University of Oxford, one of the best (if not the best) unis in the world, and I have to return home and suspend my studies in order to get whatever this is under control.

Does anyone have experiences with negative laparoscopy surgeries? If so, did you ever get answers? What happened? Does anyone have experience with Zoladex? I need some help here, thank you so much!!!

[Tboag]

Hi, sorry your struggeling with thus desease, can I ask why you need to go home? Are you not entitled to health care under the nhs,?

In England we have endometreosis centres that have specialist surgeons working in them, these are called BSGE centres, you need to get referred to the right surgeon with experience of endo, genral gynes often dont recognise endo is certain locations are therefore endo is often missed, I don't know how and what us the case in you home country, please don't give up, if you are having such problems with zolodez then don't have any more, as it could me causing you long term issues, I'm dye my first injection tomoz, in order to see if I need my overies out, I've gad a hysterectomy for Adenomyosis in July last year,

Good luck with you future x

[emilyt03 in reply to Tboag]

HI there! Since I'm here on a student visa, and when I suspend my studies due to medical problems, I'm no longer a student, which means that my visa is void. I have about two weeks to leave the country! .

Wow, you sounds like an amazingly strong person! Good luck with your injection. I do hope everything goes well for you too xxx

[Pands]

Depending on where 'home' is there is a wide range of info on endo specialists on something called 'Nancy Nook's endometriosis education and discussion group' on Facebook. It has a lot of proper endo info so not a self- help group as such. Contains reviewed and recommended surgeons across the world, though mainly US I think. Lots of proper medical info & research as well, no instant cures promoted (or allowed).

I was on zoladex for 6 months in 2011 after a successful excision surgery at a BSGE centre. I cannot have zoladex ever again but it did help me though a lot of side effects as the months wore on! Are you having the monthly injections?In which case may be worth not having the next injection if you are feeling so dreadful. I was told that at any point I could stop if I felt too bad (so not getting a good benefit from it vs the side effects!).

Yes there are plenty of medical discussions proving that degree or amount of endo dos not correlate to levels of pain, so you can have a small amount of endo and be in terrible pain. I really feel for you, it is grim and you must be very stressed as well.

Ultrasounds and MRIs are not ways of diagnosing endo - they might show up endometriomas - the chocolate cysts, but otherwise not much use, so please don't worry that there is nothing on them, you have had endo found during a lap and that is the only definitive way of diagnosing endo. My guess is that you still have endo and it has not all been excised. That and the adenomyosis. Have a look at the Nancy Nook Facebook site, it is really useful. Best wishes.

[emilyt03 in reply to Pands]

Wow, thanks so much! The US is home, so that Facebook group is going to help me so much! I think your advice about really considering the next injection is really good. My injection is due for 14/3 and I'm flying out to go back home on 17/3. I would hate hate to have my travel plans disrupted because of it.

Thanks again so much for your response. It was very reassuring and helpful.

xx

Emily