Feeling completely lost.

[littlestar01]

Hope you're all doing well.

Just looking for some advice as I'm kind of losing it. Apologies for the very long post.

Had Total Pelvic Peritoneal Excision surgery 31/10/2014, was told it all went well but had to be kept in overnight due to extreme pain around the stitches below my bikini line, left hand side. This pain was flooring me whenever I tried to move or walk. The specialist apologised as he said he'd "never had anyone with this post op complication before".

When I was discharged home, I noticed that the same pains were very mildly on my right hand side, but didn't tell the nurses, nor say how bad the left still was, I just wanted to go home (3hr 40mins away). I thought it may have been everything settling down from where he corrected my retroverted uterus.

I've tried getting back to normal, long walks etc, even dancing, but if I'm active for more than 10/15 minutes, the excruciating pain comes back on my left side.

I've spoken to the specialist who has said that it is a problem with my ligament and nerves, which may either go away in its own time, or could be a permanent feature.

On top of this, nearly 11 weeks post op and I'm still experiencing endo-like pains. Stomach is still bloated and bleeding through the mirena coil.

I know everyone heals differently, I know that with adenomyosis (diagnosed by specialist - very bulky uterus etc), the pains may not completely go away. I also know that this operation may not work as well as it does on other people (as informed by the specialist), but starting to worry that I'm almost 25 years old, spent £6k for a treatment, and almost out of options again, as well as dealing with new pains, which may, or may not go away, as a result of the op I've just had.

I've tried to stay positive, but really struggling at the moment & don't know what to do anymore.

[KatieTattie]

Hi hun, I'm so sorry you are still in pain.. I am too

[KatieTattie in reply to KatieTattie]

I wrote a whole reply n it's not come up!!

[KatieTattie in reply to KatieTattie]

Erg it's done it agsin!!I wrote a whole reply n it's not come up!!

[KatieTattie]

This is pissing me off now I wrote a whole reply n it's not come up!!

[KatieTattie]

I wrote a whole reply n it's not come up!!

[Hidden]

could it be an adhesion? Those sneaky things are everywhere.

[littlestar01 in reply to Hidden]

Thank you for your response, it very well could be. Not sure how I'd be able to get it checked out, as, according to the specialist I'm "still healing" and won't know until 6-9 months time, maybe a year, what's going on down there.

[halfpint17]

Hi, I had the same treatment as you three days before as also suffered with where he sewed ligaments into nerves. He also made out I was only patient to suffer that way from op and was told it was because I was thin, he has to sew through to outside. Fortunately the ligament pain started to settle down, along with bladder issues, recently, but now suffering massively with bowel. He'd unstuck bowel from pelvic and abdominal wall, along with being stuck to ovary. This part of op provided immediatel relief, but now it's like my bowel has stuck again, I'm guessing by adhesions. Hurts so much and definitely backward step. Surgeon said no one will help until a year after surgery. I'm so worried how much it will stick in meantime. I too have ademynosis.

I'm pretty sure your ligament pain will ease as mind did and wish you all the best. It's horrible thinking you are only patient suffering from this specific surgery, but we clearly aren't. X

[littlestar01 in reply to halfpint17]

Thank you for your response.

That's why I put the whole ligament pain phrase in quotations, knew it couldn't be a one off thing. Sorry to hear you've had it too and that you're suffering with your bowel. It's not fair that we now have to wait so long to get help when we're in so much pain again.

I tried speaking to the specialist, but all he concluded was "some days will be okay, some will be very bad"

I was optimistic about the ligament, but it's getting worse every day, which is not ideal as I'm back in work on Monday.

Hoping it fades, as that pain, on top of the chronic endo pains I had before the op, is really putting me in a bad place mentally. Feel like I'm back to where I was before the operation. Can completely understand the way you feel.

Again, I'm really sorry to hear you're having to deal with so much pain & sincerely hope you're able to find some relief x

[halfpint17]

Hey Littlestar

He also keeps changing recovery time with me too, from six months to two years! I've also been told it's part of healing, which in respect of ligaments, I believe to be true, but in terms of bowel now hurting exactly like it did before he unstuck it, is a backward step and complication, rather than healing process. I obviously would love it to be just healing process, but previous experience tells me different.

Maybe you should have an extra week off work. Ligament pain reduced recently so you're not too far behind. Did he have to sew all the way through to the outside I'm terms of ligaments? I am now left with lumps either side and scars where he did with me. Not so bothered about that, just want to be pain free.

Thank you for your kind words. Hope you feel improvement very soon. Was this your first surgery? Xx

[halfpint17]

P.S, I found the ligament pain to become a lot more painful a couple of weeks before the pain resided. Hope that helps Xx

[littlestar01 in reply to halfpint17]

Yeah he doesn't seem too consistent with what he deems to be healing time!

Completely agree, know ligaments can take a while to heal, after I had an experience with tearing one in my ankle, but as you said with your pains, the amount of pain I'm in & the symptoms I'm experiencing again, is also an indication for me that I've gone backwards.

Yeah he had to sew all the way through with me too. I've got two very sizeable lumps above the scars & where the scars are, it's caved in on both sides. They also swell up when I'm in pain (ligament and endo pains), did/do yours do that?

This was my 4th surgery, how about you?

In that case I'm very hopeful that the ligament pains sod off very soon!

Massive thank you for your response, it's a relief to know someone else is in a similar position & that it's not all in my head. Xx

[halfpint17]

I can't believe we were both opererated on within three days of each other in exactly same way and been on the phone to him suffering same, yet makes out we are unique cases. I too had to stay overnight as pain unbelievable and was bleeding from where he sewed through. I also have lumps exactly like you described and they swell up too.

What other pains are you experiencing on top, like you were before surgery? I really reckon down to adhesions replacing endorsement adhesions and been finding it very hard to be back to same pain so early on. Has your bowel or other organs had to have been unstuck?

Would be interesting to see how we both compare as situation so similar. It was also my 4th surgery....

Glad I've managed to make you feel more hopeful with regards to ligaments.

Xxx

[littlestar01 in reply to halfpint17]

Does make you wonder who else has also had the same ligament issues, and has been told that this complication has never happened before.

Symptoms wise:

Intense abdominal pains (felt like stabbing, tearing, throbbing and burning all at the same time, or get the dull throbbing pains whic grow into the intense pains.

Intense abdominal pain followed by random bleeding (specialist thinks my body is trying to reject the coil, which I've already had in for 3 years)

pains with bowel movements.

Sometimes get nausea with bowel movements.

Sudden sharp pains with bowel urgency.

Urinary pains (which are easing a bit).

Inability to empty bladder properly.

Feeling full when eating very little.

Abdominal swelling (also makes my thighs swell up, abdominal swelling is very uncomfortable and often painful)

Area above left ligament scar becomes very painful to touch (even lightly)

Vomiting with abdominal pains (happens every now and then). That's what I have at the moment, varying throughout the day, and it's getting more frequent. If it gets any worse, then I've got the other symptoms waiting for me.

Hoping pain meds will start to tackle it. How about you?

No organs had to be unstuck, I'm so sorry your endo caused organs to fuse and cant begin to imagine what that was like for you before the op. Was told bowel & abdominal wall had endo (although specialist hasnt told me how much was there). Told that how my uterus was retroverted, it essentially was doubled back on itself & putting a lot of pressure on my bowels, possibly causing bowel problems, as well as bowel problems caused by endo.

If you ever want to talk, please feel free to message me anytime xx

[Petunias]

So sad to hear you're having so many problems post op. I had TPE 9 months ago but haven't had any problems at all but i really feel for you. Where abouts did you have surgery. Mine was in Manchester at BMI Alexandra. Really hope you start feeling some improvement soon. X

[littlestar01 in reply to Petunias]

Thank you for your response. I had mine in Elland. That's brilliant that the surgery went well for you, I wouldn't wish any of these problems on anyone and also hoping it gets better. X

[KatieTattie]

What the hecks going on??!!!! (Hi little star) Add me to the list of those suffering after this op in pretty much exactly the same ways as you guys. I had my op on Nov, last month was ok but this month I'm in worse pain than before. It can't be a coincidence we are feel the same! That can either be really good or really bad can't it. I did not have anything stuck together or adhesions before the op but now I'm petrified ive got them! How would we know? It's like a cruel joke isn't it. I'm actually at breaking point today. Just ready to go to gp and get doped out of my mind everyday!! I've tried to avoid heavy pain killers but it feels like a matter of life or death at the moment. xxx