Frustrated with my recovery....

[_EndoWarrior_]

Had a total hysterectomy, bilateral salpingo oopherectomy and excision for Stage 4 Endometriosis on August 12th 2019 and recovery after this was slow as I expected. Was 12 weeks before going back to work and went back on reduced hours. Now January and still struggling. Don’t know what’s going on inside me but I feel I am worse now than I was before my operation but for different reasons. I no longer have Endometriosis pain.

I find sitting for long periods, standing too long, bending too much and lifting things (even hoovering or lifting a washing basket!) exacerbates my symptoms and I have to lay down flat on my bed for a few hours to ease my discomfort and pain.

At the start my symptoms suggested Pudendal Neuralgia/Entrapment/Compression (still could be!) but thinking could be hypertonic pelvic floor or both. I have bearable days and I have bad days and having to deal with early onset menopause due to the total hysterectomy as well, it’s hard being positive.

I am waiting on an MRI at the moment and seeing my gynae consultant in March for another follow up and to discuss results of MRI. Hoping something shows up so that I at least know what is causing my symptoms and then I can deal with it.

Anybody else going through similar situation? Did MRI help diagnosis?

[kalecolbe12]

Yes that sounds like the nerves are irritated in the muscles might be tight you're going to have to be very patient because it takes a while and you may need a pelvic floor physical therapist to help the process

[_EndoWarrior_ in reply to kalecolbe12]

Have seen a pelvic floor physio but she seems to specialise more with woman dealing with prolapse and/or pelvic floor issues after pregnancy. Some of the exercises she gave me to do like squats actually made my symptoms worse.

Hopefully the MRI will make the issue clearer. Rule certain things out too.

Going to work is hard. A few work colleagues have had or recently had hysterectomies and are fine. I get the feeling they don’t believe me or just don’t understand as they are fine.

[kalecolbe12 in reply to _EndoWarrior_]

Yes Mri should clear things up more and I find with pfd chronic pain myself that people don't understand they just don't get it

[Debra13]

Hello my name is Debbie. I’m going through menopause now. I’ve been in it since I had a partial hysterectomy. 6 months after the surgery I went into full blown menopause. Imagine they left my ovaries thinking it would help that not to happen. Boy they were wrong. I also have been suffering with Pudendal neuralgia for 18 years and interstitial cystitis for the last 3 years now. I was definitively diagnosed with PD not by an MRI but an MRN. It’s like an MRI only it concentrates more on the pelvic nerves and pelvic floor structures. I have scar tissue around my left Pudendal nerve and now found out after my partial hysterectomy I now have scar tissue around the right one too plus I also developed scar tissue around my obturator internus muscles on both sides. I also before I got the MRN had a diagnostic nerve block to the Pudendal nerves on both sides from my pain management doctor. If you have any questions please feel free to private message me. I have had almost every procedure out there except the surgery for entrapment and the cryoablation. I was scheduled for it with Dr. Prologo in Atlanta but I found out last minute it wasn’t going to be covered and I had to cancel even with my airfare paid for and hotel room. Let’s just say I wasn’t a happy camper I was told otherwise also from his office which made me even more upset. I’m now glad I didn’t go because the majority of the people I spoke to who actually had the procedure did not fend well with it and actually got worse. I also heard of a few horror stories. But I have to tell you this. Every one is different and what works for one may not work for another and vice versa. I have had nerve bocks that have helped me to be pain free for 3 days yet my friend had one and it didn’t work for her at all. Unfortunately there isn’t a set recipe for all of us. I wish there was. It would be great then we could all have some relief. So I hoped this helped a little bit. As far as the menopause it’s horrible. I just started bio identical hormones. I couldn’t do it without hormone replacement therapy anymore. I can give you some tips for the hot flashes. Peppermint oil. A few drops in a wAter bottle and when you get the hot flash spray it o. Your back. It cools you off. Just don’t make the mistake I made and use to much peppermint oil. Lol I was on fire and not from the hot flash. Also I’ve really helps with the burning in the vagina and rectum. Also sits baths with coconut oil and epsom salt. Make it hot to melt the coconut oil and salt the cool it down before you sit in it. It feels very nice when you are in it. Provided you can use coconut oil and if you can I recommend keeping it in a cool place and when burning actually put it all over down there. Just watch your clothes it stains everything. I hope these little tips helped. If you have any more questions feel free to ask. I’ve been going through this for years. Hang in there ok. God bless Deb

[_EndoWarrior_ in reply to Debra13]

Shall look into everything you’ve mentioned. Thank you 🙂

[Debra13 in reply to _EndoWarrior_]

Anytime. 👍😊

[egoose]

The MRI might not show anything depending on the Tesla strength. I had one and everything showed ok but I know it was not. Your symptoms sound like pudendal nerve to me. You have to listen to your body otherwise you will extend the healing time. No heavy lifting and limit your sitting. I tried to tough it out and just made things worse. Took over a year before the nerve calmed down enough so I could sit with minimal pain.

[_EndoWarrior_ in reply to egoose]

It’s a 3T MRI which is better however if my symptoms are nerve related I know I will probably need an MRN. I will go down that route once I know the outcome of this MRI.

I am being as careful as I can with lifting and bending.

Thanks for your reply. 🙂

[kalecolbe12 in reply to egoose]

Yes it's taken a year for me to start getting better from it too... the nerves take a long time to calm down

[Whangareinik]

I truly hope you and everyone in your situation reads this.....I had suffered for nearly four years with everything you describe post hysterectomy forgot all the MRI’ they show nothing I had two. I tried every medication under the sun, didn’t want to live, woke up every morning and was disappointed! All I can say is PREGABOLIN 100mg in morning and 100mg at bedtime.......I feel 87% like I did pre surgery. Please look into to wonder drug it trains your brain to ignore the pain...it’s magic, I have bad days still but who doesn’t? I really hope you get to read this and act upon it.

Best wishes a girl who was once you trying everything, trying to get a diagnosis etc etc but for four years! Don’t go so long pleeease

[_EndoWarrior_]

Drugs like this come with awful side effects so please watch this link before you trying...

facebook.com/RRiazza/videos...

[egoose]

Yes, take the minimal amount of pain killers that you can. I took Lyrica and Gabapentin. They are serious drugs that do relieve pain but cause other serious side affects. For me, it was vision damage from the gabapentin and lyrica was messing up my brain just like the girl on the video. They might work for some people. Try hot baths with Epsom salts. It let me get a good sleep which is important in keeping your anxiety down. I let my anxiety run away and now I am dealing with fasiculations in my legs. Praying helps a lot. God bless !

[Alaine1 Administrator]

Hi 1DayEndoDree_1

Remember that in addition you’ve had excision for endometriosis which can take up to 6 months to feel the benefit. For me whenever I’ve had excision for endometriosis it’s taken my a long time to recover. I am a slow healer anyway and have found this with surgeries other than gynae or urology related.

Don’t rule out Women’s health physio altogether. Some chose to specialise in just one or two areas but others prefer to treat all women from pregnancy, prolapse, overly tight pelvic floor etc. It may be that your pelvic floor has become overly tight and your previous physio and gynae hasn’t picked up on it. I don’t know if you are based in the UK but NHS physios do tend to focus predominantly on prolapse and pregnancy related problems. I went private and found the experience so much better and she was more thorough not just in terms of history taking but with the examination and treatment plan. It’s a possibility that this pain was with you already presurgery but the pain from the endometriosis masked it. I’ve had that with the adenomyosis alongside the endometriosis masking the pain from interstitial cystitis. I hope the MRI don’t show anything up but it’s worth asking your gynae what she suggests you do and if she thinks physio is a good idea as part of your recovery plan.

[willemine]

I have no good news for you : had that operation too and i can t sit now because of pn and my endo pain is away but i got other and bigger pain instead . Nothing showed up on mri but my endo and extensions were also not seen on mri before the surgery so my trust in mri s is very little . Its possible that the scars forms fibrosis ( if thats the right word i don t know english well ) but i mean that the scars getting hard and they forming extensions instead the endo and that hurts . I hope that is not the case and you are still recovering from the surgery.