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-   -   Question for the ladies - fibroids (https://www.englishforum.ch/family-matters-health/237600-question-ladies-fibroids.html)

Guest 29.07.2015 19:39

Re: Question for the ladies - fibroids
 
Quote:

Originally Posted by 3Wishes (Post 2426085)
I don't want to waste the nurses' time by not making my needs clear.

It's the nurse's and the doctor's JOB to make treatments clear to you and to listen to you making your needs clear, however long it takes. She/he needs to understand your needs to be able to address them, so do not ever feel bad about taking however much time you need piecing together your questions.

From your post, it seems like the most important phrase for you would be:

"Bitte erklären Sie mir das nochmals, und zwar langsam." Please explain this again, slowly"

as well as

"Wie meinen Sie das?" - "What do you mean by this?"

roegner 29.07.2015 19:42

Re: Question for the ladies - fibroids
 
Do you have a smart phone/iPad or something like that? They have translation apps, easy to use. And take your cheat sheet for the common questions :)
But I´m sure they will have (and get you) someone who speaks English if necessary!

Longbyt 29.07.2015 20:01

Re: Question for the ladies - fibroids
 
One of the catches with all this is that saying things twice, let alone explaining what you mean, is SO EXHAUSTING after any sort of op. What you really need is staff at the hospital who can mind-read. Fortunately some of them can!

Guest 29.07.2015 20:04

Re: Question for the ladies - fibroids
 
Perhaps calling the hospital on the day before your surgery and preemptively asking if whoever'll be on call before and after your surgery is English-speaking could help putting you at ease. Also tell them by phone (and again when you show up) that they should please explain things clearly and slowly due to language issues. This way they'll be informed of your situation even before you start asking questions and might prepare themselves better to explain things to you.

Guest 29.07.2015 20:08

Re: Question for the ladies - fibroids
 
Good idea, as they will then see if they can specifically 'allocate' you someone who deos speak English.

3Wishes 04.09.2015 21:19

Re: Question for the ladies - fibroids
 
So the operation is a few weeks behind me, and I thought I should post an update. First, huge thanks :thumbup: again for all the messages both here and via PM. EF is often criticized as unfriendly or unhelpful but these kinds of threads prove (to me) there are real hearts and heads behind the avatars. I am not back to 100% but I am on the mend and I feel we made the right decision.

The doctor and the anesthesiologist spoke excellent English. The nurses, not so much. Let me be clear - I know I'm in Switzerland and I don't expect everyone to cater to me, however for some reason I thought the nurses' English would be better than my German. ;) When my husband was around they spoke exclusively Swiss German and spoke to him as opposed to me. I felt a bit like an afterthought.:( When he was not around, they mostly spoke Swiss German to me but would switch to High German when I gave them blank looks. At one point in the middle of the night the nurse woke me up to tell me something and I didn't understand at all. My roommate finally spoke to the nurse in Swiss German to get the info and then explained it to me in High German.

In terms of what to expect, a few things come to mind worth sharing:

- My cheat sheet helped me know some of the terms they might use, so I mostly understood except for that one incident.

- They let me change into my own pjs as soon as I was conscious enough to do it without help. They also removed the IV before lights out, so I didn't have that discomfort while trying to sleep. This might sound normal to many people, but both of those are pretty uncommon in the U.S. ;)

- Also for the U.S. folks, you don't receive a big box with kleenex, toothbrush, hand lotion, etc. upon arrival. The hospital only provides the meds related to surgery. You bring your own toiletries and usual vitamins/medications. I actually like this, as the U.S. hospitals charge ridiculous amounts for these items ($10 for an aspirin, for example).

- I took glowjupiter's advice and had plenty of water and snacks handy. I was not in decent shape to go hunting for vending machines and I did get hungry and thirsty. ;) Dinner and breakfast provided by the hospital were exactly the same: coffee, two rolls (one with cheese and one with jam), and a pot of yogurt.

In terms of pain and side effects, it's been unpleasant but manageable. I won't go into details but if someone has to undergo this in the future and wants to ask me about it, feel free to send a PM.:)

Island Monkey 04.09.2015 21:33

Re: Question for the ladies - fibroids
 
Glad it went well.

I think it depends on the hospital and your condition. When I was in hospital I had the IV's etc in day and night for 2 weeks... and when I was well enough to eat I had a huge menu to choose from and more food than I could manage! They gave me basic toiletries until hubby brought me some from home.

CB1 07.09.2015 22:02

Re: Question for the ladies - fibroids
 
Glad to hear it went well. I had 2 big ones removed 5yrs ago. Now we have 2 beautiful children. Like you I could have tried to be pregnant with the fibroids but we knew it would make it hard. Even by the time I got pregnant the second time a new one grew and partially blocked the birth canal. I think you made the right decision and I hope in 5yrs you too will have the family you want!

3Wishes 28.07.2019 10:38

Re: Question for the ladies - fibroids
 
After numerous PMs over the past few years, I thought I should update the thread again in case it helps someone.

The fibroid was too far into the wall of the uterus to be completely removed, so the doctor cut away what she could. The recovery was fine, more like a bad period for a few months. It grew back within a year, but she had warned me that could happen.

As others warned up-thread, hormones made it grow faster. First IVF hormones and then pregnancy hormones. It grew so large it stole the blood flow to the baby and I wound up miscarrying. The doppler ultrasound was clear that the fibroid won.

It continued to grow. By the time I could face going to the gynae again, it had grown so large it distorted the womb and was no longer safe to operate or to even think of pregnancy. I was on hormone-suppressing medication for 6 months to try and shrink it. It shrank about 30%, which the doctor said was about as good as we could expect.

When I went off that medicine, the hormone that had been suppressed surged. This sent me to urgent care in some pretty unbelievable pain and was causing problems not only with lady bits but with digestion, etc. The fibroid had even grown a friend. I was lucky to have an endometriosis specialist as the doctor that day. Turns out I have deeply infiltrative endometriosis, sometimes also called deep invasive endometriosis. Previous doctors had failed to diagnose it, probably because of the focus on the fibroid and all the hormones I was ramping up and suppressing over and over. The fibroid was one problem, but it wasn't the only one.

Our dream of becoming parents of our own child is over. My only options are hysterectomy with a bowel resection or hormone-suppressing medications until menopause. For now we've chosen medication.

I realize this is a lot of info to take in and I don't want to scare anyone who has fibroids. My recommendation would be to seek second opinions and get as many tests as possible so you know ALL the problems before you try to tackle them - particularly if you're considering the roller coaster of IVF. We would have saved a ton of money, a lot of medical interventions, and a lot of emotional heartache had we known all the facts before.

Hope it helps someone.

roegner 28.07.2019 10:46

Re: Question for the ladies - fibroids
 
Very sorry for you, never the news you want to receive. And good luck!

Belgianmum 28.07.2019 10:52

Re: Question for the ladies - fibroids
 
What a rollercoaster ride you’ve been on!
So sorry that things didn’t work out as you’d hoped for.
Thank you for thinking of others and taking the time to write all of this, it can’t have been easy for you.

doropfiz 28.07.2019 10:52

Re: Question for the ladies - fibroids
 
Oh, wow, 3Wishes, that is very heavy news you have to face. I'm so sorry to hear you're going through that. I send you a virtual hug.

Guest 28.07.2019 11:13

Re: Question for the ladies - fibroids
 
I‘m sorry you‘ve gone through all of that. Thanks for letting us know. Big hug to you.

We still don‘t know nearly enough about women‘s stuff - because we don‘t always talk about it. So thank you for that.

Cider Woman 28.07.2019 14:10

Re: Question for the ladies - fibroids
 
I am really sorry for all the anguish, loss, pain, disappointment that you've suffered, regardless of the financial impact.

Cherub 28.07.2019 18:09

Re: Question for the ladies - fibroids
 
I have been post menopausal for 12 years, since I finished treatment for breast cancer at the age of 46 in the UK. I have had a number of gynae problems since, mainly relating to the fact my right side ovary has not quite shut down properly. Every so often it tries to fire up again, this can cause a slight bleed and all post meno bleeds should be investigated. I also have 2 fibroids, but as they are the size of lentils due to the lack of hormones I've been advised they can be left.

I would honestly say my experiences with gynaecologists in Switzerland have been far superior to back at home. I went through an accelerated menopause over the course of a weekend due to a chemo drug I had to be given and it was sheer hell. By age 50 I was having gynae problems and in an appointment with a female Consultant Gynaecologist and her female Registrar at a Hospital local to my home in Scotland, I just happened to mention I had experienced a total loss of libido which I found distressing as at that point I'd been married for 25 years. The reply I had from both of them was "what do you expect, you are 50". Talk about lack of empathy!

Since I moved to Basel with my husband's job I would say my experiences have been much better. I have had 2 D and C procedures because the lining of my womb thickens and this is known to sometimes become cancerous; during the procedures I've had polyps removed as routine. The first D and C required me to stay in hospital overnight at the insistence of the surgeon, second time I was able to go home after 3 hours provided my husband collected me.

I have also luckily never seen a GP or surgeon in Basel who didn't speak English, my husband had a procedure done here 2 years ago where he was treated by a British Professor. I've had one nurse who spoke just about every European language but no English, it wasn't a problem as there was a domestic assistant on duty who spoke English. (My German is currently hovering around B1 level, but i wouldn't be confident handling medical matters).

3Wishes 28.07.2019 19:09

Re: Question for the ladies - fibroids
 
Quote:

Originally Posted by Cherub (Post 3086472)
...I would honestly say my experiences with gynaecologists in Switzerland have been far superior to back at home...

Thanks for sharing your story. I wouldn't say the gynaes here were bad, more that it seems to have been a case of spotting an obvious answer and running with it. Ultrasound showed a big fibroid. Okay, that must be the main culprit. Neither the doctors (yes, more than one) nor I looked further. In hindsight, we should have.

Kittster 28.07.2019 20:59

Re: Question for the ladies - fibroids
 
I am so sorry this has happened, thank you for sharing your ordeal, my heart aches for you.

Having had (thankfully benign but still health-impacting) fibroids myself, I noticed there seems to be a general "wait and see" approach, whereby the gynae speculates that you will take the initiative yourself if matters get worse. However, I feel like hormonal issues can get worse so gradually that you may keep putting things off or not want to make a fuss, like the often cited frog in the water that heats up gradually until the hapless amphibian is cooked. And of course, the popular "if in doubt, take the pill" view is not necessarily helpful, often just being a superficial solution.

Like edot said, women's health is clearly just not considered as important or we would have more and better research on these things. Mind you, we still get the privilege of paying higher insurance premiums because doctors will happily treat symptoms until the cows come home but looking for the root cause is a different story.

I believe that owning a more complex machine (aka body) compared to the other half of the population requires the mindset of a skilled mechanic. You need to understand what is going on and how you can influence it for the better if nevessary. I love how technology has helped me with this, I use Tempdrop and Ovuview to keep track and my gynecologist really digs having data to work with.

Contrary to the common narrative, It is not normal for your menstrual cycle to negatively impact your life. It is not normal to feel tired all the time or be in agonising pain on a regular basis. I know we try to grin and bear it and for the most part try to hide what is happening because there is so much social stigma attached. I know people, even women, don't like talking about it but we deserve better.

So like 3wishes says, if in doubt, be the person who demands a better answer or a second opinion. Pay attention to what is normal for YOUR body, document it. The literature talks about averages and standard deviations; make sure you have your own data.

AnnaSophiaA 28.07.2019 23:17

Re: Question for the ladies - fibroids
 
I am so sorry to hear your experience, 3Wishes. Really. My heart goes out to you. Thank you so much for sharing. We do not talk enough about women’s health!

Quote:

Originally Posted by Kittster (Post 3086502)
Having had (thankfully benign but still health-impacting) fibroids myself, I noticed there seems to be a general "wait and see" approach, whereby the gynae speculates that you will take the initiative yourself if matters get worse. However, I feel like hormonal issues can get worse so gradually that you may keep putting things off or not want to make a fuss, like the often cited frog in the water that heats up gradually until the hapless amphibian is cooked. And of course, the popular "if in doubt, take the pill" view is not necessarily helpful, often just being a superficial solution.
...
Contrary to the common narrative, It is not normal for your menstrual cycle to negatively impact your life. It is not normal to feel tired all the time or be in agonising pain on a regular basis. I know we try to grin and bear it and for the most part try to hide what is happening because there is so much social stigma attached. I know people, even women, don't like talking about it but we deserve better.

So like 3wishes says, if in doubt, be the person who demands a better answer or a second opinion. Pay attention to what is normal for YOUR body, document it. The literature talks about averages and standard deviations; make sure you have your own data.

I’m not having an easy time with Gynaecologists in CH, have definitely experienced a “wait and see/take the pill” approach. I don’t at all feel in good health in this way, but two have completely dismissed my concerns and told me to take the pill and watch my symptoms melt away...I’ve refused the pill for a few reasons, among which family history with female problems and the fact that I already have a small list of autoimmune disorders and I’d hate to mess with my hormones without having any tests done showing a real need... if any of you have recommendations for a good Gynaecologist (French or English speaking) in Fribourg/Payerne région (would consider driving to Bern or Lausanne) that would be very much appreciated.

terrifisch 29.07.2019 01:46

Re: Question for the ladies - fibroids
 
My heart goes out to you 3 Wishes! Thinking of you and so sorry for your what you have gone through. I cannot imagine how you feel and what you have gone through but wanted to let you know how much others will benefit from your post.

greengrass10 29.07.2019 14:35

Re: Question for the ladies - fibroids
 
Quote:

Originally Posted by 3Wishes (Post 3086370)
After numerous PMs over the past few years, I thought I should update the thread again in case it helps someone.

The fibroid was too far into the wall of the uterus to be completely removed, so the doctor cut away what she could. ..

It continued to grow. By the time I could face going to the gynae again, it had grown so large it distorted the womb and was no longer safe to operate or to even think of pregnancy... Turns out I have deeply infiltrative endometriosis, sometimes also called deep invasive endometriosis. Previous doctors had failed to diagnose it ... My only options are hysterectomy with a bowel resection or hormone-suppressing medications until menopause. For now we've chosen medication.


Hope it helps someone.

3Wishes, many thanks for sharing your story and sorry to hear about what happened after the surgery. Maybe a solution can still be found. If you don't mind me asking, how big is your fibroid now? You mentioned your only options are hysterectomy with bowel resection or medication. Why would you need a bowel resection? Is there some kind of adhesion of the fibroid to your bowels? Also, what was the source of your pain after the surgery? Was it related to the fibroids? Or was it the endomitriosis?


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