F-act Pelvic Pain Clinic the Netherlands, my experience

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Lupita
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F-act Pelvic Pain Clinic the Netherlands, my experience

Post by Lupita »

Hello,

I will talk a little about my experience in the F-Act pelvic pain clinic. I was there for one week. [Link update comment removed - admin]

I will make a small summary. I was there the first day the 19 of May where Fetske and Branca (her co-worker specialized mostly in the outside work/muscles). First I talked and was examined for 2 hours by Fetske, where after talking a lot and evaluating me she "discovered" that my pelvic pain was actually, because of an injury I had when I was 13 years old and the right side of my pelvis went "up". Then Branca analyzed my outside muscles of the pelvis (Fetske analyses the internal muscles). Where again my right side was much more tense. I just wanted to write this here, because stress is not always the reason for pelvic pain. Anyways she also encouraged me to do paradoxical relaxation and de-stress, but this is not my main goal. I should work more on the muscles, because my pain came from an injury.

I also found this 3-4 hours evaluation as something very useful, so one knows exactly why does one develops pelvic pain and one becomes an individualized program (for example I have to search also in Germany a manual therapist who helps me with the "up slip" of my pelvis). If I wouldn't have done this evaluation I would just have done trigger point release and de-stress without focusing on my main problem which is the up slip of my pelvis due to the injury I had.

The next day Fetske and Branca treated me with trigger point release, skin rolling, stretches and awareness training of my pelvis. Which I had to continue doing the next days at home. After 3 days I had another two appointments where Branca supervised that I was doing the exercises in the right way and evaluated if I had any improvement and the next day Fetske evaluated my pelvic floor muscles (from the inside) and then we cleared a couple more of questions that I had.

Now I am back in Germany and still have not felt any big improvement, just some changes in my feeling of the muscles and maybe some improvement in my top of the penis pain.

Fetske and Branca where both very kind to me. Specially Fetske, she leads the treatment and has been working for approximately 25 years with pelvic pain and she is one of the pioneers in this field. She even gave me her phone number when I was there so if I felt too much pain I could call her and she would have come to the town to treat me again on her free days (on the weekend). She and Branca took some extra hours of the treatment that I paid and I didn't had to pay extra for those extra hours. Fetske even drove me from Enkhuizen to Amsterdam, because I had to take my flight from there and she had to go to a TV show in Amsterdam. Of course I could make even more questions and I didn't had to pay extra for that time. She also gave me for free a Crystal Wand (I am also a student and she probably knew I don't have that much money).

So as I said is still have to do much work and have not yet felt any big improvement, even if Branca and Fetske where noticing some improvement in my muscles and the pain I felt when they treated me for the second time. I will see how my treatment goes and I can just highly recommend this clinic for anybody. I will make another post of something very useful that she explained me which could help many people with the internal trigger point release. I will post that now in the General Discussion.

Cheers :D
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Re: F-act Pelvic Pain Clinic the Netherlands, my experience

Post by webslave »

Thanks, I have updated the link.
still have not felt any big improvement, just some changes in my feeling of the muscles and maybe some improvement in my top of the penis pain.
It takes time. Any change is positive.
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Alphalifestyle
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Re: F-act Pelvic Pain Clinic the Netherlands, my experience

Post by Alphalifestyle »

Hey dude,

I am also from Germany and also a student who does not have that much spare money... :) I was also thinking about visiting the F-act Pelvic Pain Clinic.
How much did you pay for the treatment and did you only go there once for several days or do you still go to the Netherlands regularly to see them?
Age: 26 | Onset Age: 16 (but got much worse around 22) | Symptoms: hard, cold flaccid penis; reduced sensation/numbness; diminished erections; premature ejaculation; urinary frequency; burning urination; urgency (bladder and urethea inflammation); painful ejaculation | Helped By: Exercise, cold shower, internal massage, massage of inner tights, abstinence, stretching | Worsened By: sex/masturbation; working on the computer too long | Other comments: I am always worrying it is nerve-related and cannot heal naturally.
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Re: F-act Pelvic Pain Clinic the Netherlands, my experience

Post by Lupita »

I went there for a week and I paid €1200. I had 3-4 hours evaluation, then the next day 4 hours treatment + exercises for home, then after 3 days 1 hour checking that I do the exercises good with Branca and the next day 1 hour checking I do the exercises right with Fetske. They taught me all I need so I don't need to go to them again. You can even Skype half an hour I think for €50 later if you want. Or you can send emails for free (that is what I have done now with a couple of questions that I had). Check their website and contact them. I can highly recommend them to you. In my opinion they are maybe the best physical therapists for pelvic pain from what I found in Europe.

In Germany there is another guy in Cologne (Koln) who is doing a "modified Wise Anderson Protocol", but with him you have to pay around €2500 for one week treatment. Here is the link:
http://www.ebzkoeln.de/pages/en/disease ... m-CPPS.php
The name of the doctor is Arne Wilhelm. I think he is on the right track, but he has around 3 - 5 years experience with his "modified Wise-Anderson Protocol". And F-act they have 25 years experience and only focus on pelvic pain (the guy from Cologne is a proctologist).

I don't know if you have seen any physical therapist. But what I did is I went to Cologne to make a check for one hour, that cost €80. He saw my pelvic floor muscles were tense and I can benefit from physical therapy. Then I decided to go to F-act to the Netherlands, which I found very good (better than Cologne). So think about it. Don't just see urologist, it is very different to see an urologist to see a physical therapist who knows what they are doing.
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Re: F-act Pelvic Pain Clinic the Netherlands, my experience

Post by Alphalifestyle »

Hey, thanks for the detailed answer. I am also aware of the Beckenbodenzentrum in Köln, which is actually where I live, so I was also considering going there. I read some reports about the Cologne clinic on the German pudendal neuralgia board so, which sounded a little weird. The guy who went there reported that the doctor checked his pelvic floor for triggerpoints and then concluded that he would need physical therapy. Apparently they work with 2 FEMALE physical therapists near Cologne (when you check their website they mention pelvic therapy, but only for women; its a little worrying for me that they do not mention male pelvic pain at all), which that guy saw weekly after the initial and short checkup in the Pelvic Floor Clinic. Also he mentioned, that the doctor recommended him to take several supplements to alkalinize the body, like minerals and B-vitamins... I am not sure if that would really have any effect on pelvic pain and dysfunction, anyway, from reading the report I question what exactly the €2500 are paid for?

Anyway what I want to say is that on their website it sounds like a holistic concept for treating CPPS with the modified protocol, but from the few reviews I could find it did not sound like it basically just was a checkup and subsequent PT visits... in which case I would agree with you, that I would probably be better to spend my time and money on the more experienced therapists in the Netherlands.

Nur noch mal kurz auf Deutsch, weil ich es eilig habe:
Die Damen schreiben ja auf ihrer Website, dass das "Rundum Paket" quasi neben dem Checkup und der Behandlung auch quasi "Education" in Sachen CPPS beinhaltet. Ich habe nur weiß Gott schon alles zum Thema xfach gelesen und hab eigentlich keinen Bock auf sowas, ich will eigentlich nur die ausführliche Untersuchung, Behandlung und eben wie bei dir Unterrichtung in "Selfhelp" Techniken für Zuhause. Hattest du diese Woche quasi als Privat 1on1 Programm arrangiert? Hat dieses Program irgendwie einen Namen? Gibts bei denen in der Nähe ein günstiges Hotel? Wenn man eine Woche dableiben "muss", dann hat man sicherlich auch etwas Zeit um Sightseeing in Amsterdam zu machen, richtig? Auf jeden Fall mal schön einen Leidensgenoßen aus der Heimat zu sehen! Schade das dieses Forum keine PN Funktion hat... :( Danke für deinen Bericht und alles Gute!
Age: 26 | Onset Age: 16 (but got much worse around 22) | Symptoms: hard, cold flaccid penis; reduced sensation/numbness; diminished erections; premature ejaculation; urinary frequency; burning urination; urgency (bladder and urethea inflammation); painful ejaculation | Helped By: Exercise, cold shower, internal massage, massage of inner tights, abstinence, stretching | Worsened By: sex/masturbation; working on the computer too long | Other comments: I am always worrying it is nerve-related and cannot heal naturally.
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Re: F-act Pelvic Pain Clinic the Netherlands, my experience

Post by Lupita »

Hey :smile: I will write my whole response in English. The €2500 are paid for from what I remember approximately: €750 physical therapy 1 hour 5 x week, €750 psychological therapy (paradoxical relaxation or other relaxation therapy I don't know exactly which they use), €750 for putting this minerals and procaine and some vitamins in your blood + recommendation on what you should eat + €150 some kind of dentist physical therapist if you have TMJ and €100 Osteopathy... something like that was it.

I would advice you first of all that you contact them. Write them an email with your questions, they can answer them. But I will answer your question of what you asked here: yes, it was 1 on 1 program they just saw me when I was with them and there were no "groups of people", the program doesn't really have a name, because it is not a program as in the Wise-Anderson Protocol where many people meet on one place, they treat you individually depending on your needs. I think I wrote up how much time I had with them and the amount I paid. I found that time good, maybe one or two more hours would have been better to be completely secure, but I felt sure because I can Skype with them or write them Emails...

There is a hostel. From what I saw the cheapest was €30 the night, that's why I preferred to do couch-surfing and I had a really good experience, the guy where I was he gave me my privacy and could use his toilet to do my exercises. Yes you could see Amsterdam it is just one hour ride, but I preferred to stay there (the town is very beautiful, I didn't expected that) and focus just on my therapy. They don't really "teach" you about CPPS they just explained me what I personally had and what I should do and asked all my questions, so its not as if you are going to be wasting your money listening to something you already know. They specific diagnosis for different individuals is what I found the best of their treatment.

Now I just have a couple of questions that could help me... could you give me the link of the group of the pudendal neuralgia from Germany?? My pudendal nerve hurt when she touched it and said it is compressed or "damaged". I don't know exactly but more info on that would probably help me.

Sadly I have not been able to continue with the exercises they showed me, because my knee hurts when I do this exercises. I am just focusing on getting better from my knee, anyway I had many TP in my gluteus muscles which I feel are so tense because I cannot stretch my knee for a long time.. hope to get better on that and maybe my CPPS improves...
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Re: F-act Pelvic Pain Clinic the Netherlands, my experience

Post by webslave »

My pudendal nerve hurt when she touched it and said it is compressed or "damaged"
Hmm. This makes me think these people are influenced by the "pudendal nerve entrapment" movement in France. I would be very cautious about using the F-Act clinic after hearing this.

More on pudendal nerve entrapment
https://www.ucpps.men/puden ... pment-pne/
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Re: F-act Pelvic Pain Clinic the Netherlands, my experience

Post by Alphalifestyle »

Yeah Lupita,

Thanks for the information. I posted the link to the German PN Forum, but I think it was removed by moderators, because those forums are unwelcome here, for a good reason I think.

I read a lot about this whole PN/Pudendal Entrapment thing in the past and I came to the conclusion, that unless somebody had a severe accident, like a fall on his tailbone or an intrusive operation in the pelvic region and has an onset of "PN/PNE" symptoms immediately after that event, its probably not possible that you have any real damage to the Pudendal Nerve. If you don't have complete 100% numbness in the genitals, incontinence and unbearable sitting pain, I would forget about a "damaged Pudendal nerve", it just gonna give you anxiety about a condition, which is not even accepted by mainstream medicine. Just read the link, webslave posted, and also read what the Pelvic Floor clinic in Cologne wrote about that matter:
"Eine Freilegung des N. pudendus oder andere Operationen wirken in der Regel nicht oder verschlechtern sogar das Krankheitsbild. "
(Freeing up the N. pudendus or related operations in general have no effect or worsen the condition)
That being said, our Pudendal Nerve is probably irritated, like almost all other tissue in an unhealthy, chronically tense pelvic floor.

I myself have pretty severe (but not complete) numbness in my penis, but I think its really just the pelvic floor dysfunction, because there are those rare days when my symptoms subside, mostly after doing some new stretching or having some success with internal self-treatment, but in my opinion any improvements, even if they are just for a few days, show that its not permanent damage and their is still hope for a total recovery.

So I agree with webslave, from all my reading, it appears, that even more severe or unusual pelvic pain symptoms are due to pelvic floor muscle dysfunction and not a damaged nerve.

There is a guy so you could contact, I am not 100% sure about him, but he was diagnosed with PNE and had several unsuccessful operations and in the end cured himself with a kind of movement therapy called "Restorative Exercise". You can google Restorative Exercise + Katy Bowman to find material also specifically on pelvic floor exercises. It's all about reverting many years of bad posture and unhealthy lifestyle (like sitting too much, masturbating too much, moving too little and wrong).
Age: 26 | Onset Age: 16 (but got much worse around 22) | Symptoms: hard, cold flaccid penis; reduced sensation/numbness; diminished erections; premature ejaculation; urinary frequency; burning urination; urgency (bladder and urethea inflammation); painful ejaculation | Helped By: Exercise, cold shower, internal massage, massage of inner tights, abstinence, stretching | Worsened By: sex/masturbation; working on the computer too long | Other comments: I am always worrying it is nerve-related and cannot heal naturally.
Lupita
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Re: F-act Pelvic Pain Clinic the Netherlands, my experience

Post by Lupita »

Hello,

I thank you both for the information. I will google it.

Let me just say that maybe I am saying the things not as she said it exactly. I think Fetske also doesnt think that PN surgery is good. I think she thinks more like you Alphalifestyle. That the Pudendal Nerve is irritated, not that I need any operation. But she was kind of clear that when doing internal trigger point massage if one has an irritated PN it can cause just more pain if you are pressing on it for long time, thinking that one is releasing a TP when one is actually just pressing the PN.

And ofc she also thinks that the best way to "cure" the irritated PN is through TP release, stretching, skin rolling, relaxation, etc. So I just don't want everybody to think that she recommended some kind of PN surgery, but I think she has done much research and treatment and learned that (at least in my case) I should avoid pressing the PN while doing internal TP release.

I still recommend her a lot. I don't know many other physical therapists, but one could see that she had much experience and was always trying to improve her therapy and investigate more. She even talked to me that she did this things of opening dead cadavers of humans to investigate better the pelvic floor anatomy and where are the nerves, investigate more precisely the muscles, etc. So yeah ALphalifestyle thanks for the info and I still would encourage you to contact them and if you have some money go there, especially if you haven't seen any physical therapist :)

Cheers
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Re: F-act Pelvic Pain Clinic the Netherlands, my experience

Post by European »

I basically agree with both of you, Lupita and Alphalifestyle. Pudendal nerve is a part of this havoc, surely it is one of the prominent channels how our pain is transmitted, but rarely is a sole culprit. True PNE does exist, but is very rare and improbable in cases like ours. Other nerves are also playing its role and the name of the condition - pelvic myoneuropathy - clearly indicates that neurological component is in play. I was also speculating about damaged pudendal nerve, but the fact that I had this condition in first years in wax and wane modus, excludes direct PNE. You cannot be trapped and untrapped. On the other hand, vigorous flares of CPPS after ejaculation are quite frequent. Agree that PT is right choice, but treatment is extraordinary difficult, because all the pelvic terrain is shaken and the least insignificant stimuli might inflict another flare-up.
Age: 41 | Onset Age: 36 | Symptoms: Chronic pain in the penis, groin, pubic area and pelvic muscles, mainly ischiocavernosus area | Helped By: Elavil, PT | Worsened By: Stress, ejaculation, depression | Other comments:
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Re: F-act Pelvic Pain Clinic the Netherlands, my experience

Post by Luxemburger1977 »

Hi Lupita, Hi all,
As a matter of fact, I live close to Germany and found very good treatment so far with Dr Pohl PT-type body therapy and I am so glad I found it and got an appointment early enough in the process, otherwise I have no idea where I would be today and what kind of hard stuff medication they would make me swallow by now.

Anyway, at some point, I also thought of F-Act pelvic pain clinic as an option but had to give up soon later because I was stuck home, in bed, with pain that prevented me from travelling that far. By now, I could possibly consider the option again if I were to expect anything (if at all) that has not been uncovered so far.

Strangely enough, for me, stress might have been one of the triggers but later there has also been a suspicion that exactly in the same way it happened to you, because of an injury I had long ago, the right side of my pelvis went "up" somehow, which might explain why I have had most symptoms in the left part of my pelvis and body overall.

Could you let me know more about Branca's external evaluation? Did she scan you from the navel to the knee or go from head to toe really? In case she did carry out extensive evaluation, perhaps I could get to know more about my own condition, how to resolve it and prevent it in the future ...
Thanks for your help!
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Re: F-act Pelvic Pain Clinic the Netherlands, my experience

Post by Tigerwilly »

I traveled from Finland to F-act pelvic pain clinic to treat CPPS that I had suffered from almost 5 years. Before I found Fetske and her clinic I had for several years tried to find an answer to my problems and why I was having them.
For me it was constant urge to pee, pain in the perineum are and pain around the ASIS bones.
For several years I had extensive medical research done by top doctors and physiotherapist, including the prostate, bladder and pelvic area with no findings.
I really had no expectations when I walked in to Fetske's clinic the first time.
Talking to her I quickly realized that she really knows what she is talking about and that she has a lot of experience treating chronic pelvic pain in male patients.
Every single doctor or therapist before that usually had no idea what I was talking about, it always felt like I knew more about it than them.
I was at the clinic for 3 days and she really looked at my problem from a new perspective, focusing on the whole body and not just one specific organ and area like all other treatments before. She found that my pelvic floor was really tight and contracted and that I had problems relaxing it. She did internal treatment on the pelvic floor, she also found that my diaphragm was not moving correctly and that I had coordination problems in my lower back that was causing problems like stiffness in the muscles.
Everything was really professional and I felt that they really cared about me and wanted to help me.

I also had treatment from Branca who is the physiotherapist there. She put together an exercise program that I can do after the treatment at home to maintain all the work that had been done. This included skin rolling, stretches and pelvis awareness training.

Of course there is still a lot to be done to get 100% cured, there is no magic cure to this problem. What I got from the clinic is tools that I can use to get better and confirmation and diagnose of what it is that I am dealing with.

I really can't recommend this clinic enough and I am so happy that I went there and got treated.
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Re: F-act Pelvic Pain Clinic the Netherlands, my experience

Post by Hallkb »

What is your status today ? Did it help ?
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