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ED Matters

User
Posted 10 Feb 2020 at 14:48

Firstly I have to say, I am very lucky; well so far so good I should say, I am really sorry for men who have not been so lucky, and I do realise not everyone appreciates reading about a fairly good outcome , well I wish I wasn't writing this in the first place as I am sure everyone on this Website must feel the same.

An update ; I am 65 , fairly fit and I am  actively involved with Cycle racing . Having had a steady PSA increase of between 5.0 to 6.6  over a 5 year period ,a follow up test last August resulted in level of 7.8 being recorded , enough rise to decide on having a biopsy , an MRImp scan followed this and I had the Biopsy on 6th December 2018. The Biopsy took longer to get an appointment for as I decided to have the Template Biopsy (note, PC UK kindly sent me information about Biopsy options).

On January 15th 2019 I was diagnosed with PC , and was told by the Surgeon I would require Radical Treatment; surgery to remove the prostate gland, or other treatments, this was quickly followed up by more scans including a bone scan. Other appointments to discuss treatment options followed and due to my fitness level being reasonably good ,I decided to go ahead with the Robot assisted Prostatectomy for the removal of the gland.

All went well with the Prostatectomy that was carried out at North Staffs University Hospital, I returned home the day after the operation. Fortunately I recovered fairly quickly, the incontinence slowly improved and the pelvic floor exercises really helped, I also visited a nurse at a local clinic to discuss Bladder care; OMG this really really helped , she discussed input and output of fluids ,what drinks to have ,what not to have Bladder exercises (it's a muscle) , what foods not to have. Very quickly the Incontinence cleared up, I returned to work, got back training and did my first bike race exactly 3 Months after the operation.

My PSA at the first 3 Month check was 0.02, at 6 months 0.03 and 9 months 0.02 , which is more or less undetectable according to my Surgeon.

Now what has not been good is the Erectile Dysfunction (ED ) problem, this has been the slowest process in getting an appointment for, it has been an embarrassing,  humiliating , and uncomfortable experience, disappointing etc ,etc . Due to the operation ,my penis is now a bit shorter and feels cold, well to be fair I was told it would be and I am cancer free , so I shouldn't worry, but I do . 

Just before Christmas last year I had an appointment to discuss using a pump ,Having tried different types and strengths of Viagra without success, just a bad headache and a bright red face with no erection. Please don't get me wrong, if I had  been told on my way down to the Theatre that this would be the worst case scenario, I would have been well pleased as I am today. However I am working on the ED and it could take up to 2 years. Going for the appointment about the pump was one of my lowest days, I went on my own not with my wife as I was embarrassed .

I was met at the door of the Hospital treatment room by a young Asian man ,very smart, wearing a 3 piece suit (no white coat), he introduced himself, I realised quickly that he was a representative of the company that supplied the pump.He explained about the pump how to use it etc etc , he then advised me that I should actually use the pump whilst with him; OMG this was a horrible experience, fumbling around in a cubicle with a total stranger (Rep), with my penis out , tubes, rubber washes, gaskets and lubricant pushing this bloody lever up and down and trying to get the old lad to respond, it didn't help that I was wearing a shirt and the material was getting in the way. After this procedure was over ,I quickly got dressed and chatted to the Rep, realising that he was washing the tube and rubber gasket under the tap and drying it with paper towels, I realised at that point, that this is the only tube they use, I certainly didn't see him take a new tube and rubber gasket out of a new wrapper or indeed dispose of the one I had used.

When I came out of the hospital , I didn't know whether to laugh or cry, I was trying to look at the funny side of it all , perhaps they had a nick name for the tube, it had certainly seen a lot of action, at least I had got my letter for the G.P and my next worry would  be would they supply the pump on the NHS , the cost being in the region of £200 .

To be continued,

Tilco

User
Posted 10 Feb 2020 at 16:59
I would laugh after leaving the hospital, as you say β€˜ cancer free β€˜ if there is such a thing . Have you tried watching adult films to see if you have any response, me after RT/HT I found i did respond . HT certainly affects big time your sex life but personally I think within time I will get back to a bit of normality ?
User
Posted 10 Feb 2020 at 17:19

Tilco

I agree, you have to laugh. It's the only way to go I have found with the ED. My experience was different. I did not have to perform with the Soma Erect/Response 11 Rep. He was very informative with his demonstration - clothes on. I have been using it for 5-6months now and there is definite improvement after use. Proper erection No, improvement yes. I think Andy 62 could explain but basically the outer tissues of the penis respond but maybe not the inner ones - Corpus Cav'.

User
Posted 10 Feb 2020 at 17:20

Hi Malcolm, Well I got the pump and have been using it , despite my bad experience at the pump appointment, the pump company representative did give me good information.

Having used the pump for over a month now and with the aid of some adult films , I am able to get a good erection and using the bands , can keep this for a good 30 minutes. I certainly have got my penis back to what it was before, and my orgasms are amazing, albeit dry orgasms as I also had my  seminal glands removed >

I feel so much better mentally now that I can maintain a good erection, the pump definitely works, but like everything practise makes perfect, well perhaps not perfect , but getting there .

 

Good Luck ,

Tilco     

User
Posted 10 Feb 2020 at 17:24

If you can keep an erection for 30 mins after pump use with rings then you are doing very well.

User
Posted 10 Feb 2020 at 18:36
TIlco Sounds good ,you are on right track !!!!’ Well done
User
Posted 10 Feb 2020 at 21:00

Sounds like you're doing well.

It's hard to decide whether I'd rather be the patient or the rep.

My pump came from LoveHoney for £30.  It was in an unmarked box luckily as we weren't in and it went next door.

I can't say I like using it or the cleaning but it made a big difference right from the start.  I just worry about it bursting a vein.

Doesn't everyone have a dry finish after the op?

User
Posted 10 Feb 2020 at 23:05
No "real" ejaculate is guaranteed by a prostatectomy. My wife says it's the only thing she really likes about PC treatment!

Unfortunately for her I occasionally still get wee as ejaculate so she can't rely on it!! πŸ˜‚πŸ˜‚πŸ˜‚

User
Posted 10 Feb 2020 at 23:38

I think you have to have a bit of a laugh with this disease, when you can. Whilst being diagnosed and treated, if friends asked about my latest hospital visit I'd reply "well, when I walk in a hospital they just look for the nearest bit of medical equipment and then shove it up my arse."

I'm glad to hear you're having some success with the pump. I'm always happy to read a good news story. 

Dave

User
Posted 22 Aug 2020 at 10:32

What I love about this thread is the humour running through it. Definitely one of the blessings of my experience has been humility. I used to consider spontaneous erections and sex a kind of god-given right, now I understand it takes some preparation and effort. But it is still worth it! 

I don't think I would still be trying if it wasn't for laughing about it, and it's the same for my wife. We have to put all those porn terms like "love hammer" and "iron rod" way out of our minds, and focus on making love with our whole imperfect bodies (whether alone with ourselves or with partners). And laughter helps with getting over the awkwardness - thanks guys!

User
Posted 03 Sep 2020 at 18:38
Im laughing, well not really.

My penis too had shrunk and I had internal discomfort for some time. 6 mnths on, less discomfort but penis no change.

My ED appt was by telephone with a nurse who was lovely. She tried. (This was post covid)

For reasons various, I opted for the pump. Disaster. Painful. Couldnt get it to work its magic. Total failure.

With much stimulation I can achieve orgasm by hand but its difficult with no erection

Can anyone recommend a good sex aid instead..?

User
Posted 03 Sep 2020 at 18:54
Persist with the pump before writing it off - which pump is it and how disastrous was it?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Sep 2020 at 22:10
The only instance I know where the pump consistently failed was with a close friend on this forum. He had a naturally non-retractable β€˜ tight β€˜ foreskin which he had lived with all his adult life. Didn’t bother him at all really. I don’t really understand all this as I’m circumcised. However he could never use his pump from day one as when he did it tended to retract his foreskin too far and cause him unbearable pain

If life gives you lemons , then make lemonade

User
Posted 03 Sep 2020 at 22:27

Mar. Keep on trying with the pump. I know how ridiculous it feels but think of it as rehabilitation. I had the OP 50% nerve sparing May 2019 aged 60. Started pump & Sildenafil/Tadenafil varieties probably 6 months later. Do I have natural erections now over a year on ? No, but definite improvements. I for one will keep on trying.  

User
Posted 04 Sep 2020 at 04:57

Mar,

The pump demo on yourself is really important, and it doesn't sound like you had this. It doubles the chances of using the pump successfully at home, and there's quite a lot more to the pump than you might realise without this.

If the pump is a SOMAerect model supplied via iMEDicare (NHS or private), they will do the demo via a videocall during COVID. They also produced a new video at the start of lockdown which covers more of what's covered during the demo, https://youtu.be/HJWCzzII1oI

I have to say the demo I had in-clinic by the rep was very professional, not embarrassing. I hadn't realised I was going straight into a pump clinic beforehand - I was referred by the urological radiologist at my 6 week review, and thought it was just an ED clinic. However, I had already read how important the demo on yourself is, so I knew if it was offered, I would accept.

User
Posted 04 Sep 2020 at 13:45
When the pump completely fails, it is often down to something as simple as not knowing that the pubic hair needs to be trimmed to be able to get a good vacuum, or that the pumping needs to stop and start to allow time for the blood to flow or even just that you need lube on the inside of the tube as well as the outer rim to stop skin drag.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Sep 2020 at 17:23

Originally Posted by: Online Community Member
When the pump completely fails, it is often down to something as simple as not knowing that the pubic hair needs to be trimmed to be able to get a good vacuum, or that the pumping needs to stop and start to allow time for the blood to flow or even just that you need lube on the inside of the tube as well as the outer rim to stop skin drag.

... or not knowing you need to use a constriction ring to retain the erection when you take the pump off.

That's come up a couple of times in conversations I've had.

User
Posted 04 Sep 2020 at 17:26
Indeed
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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