Pelvic pain after surgery : Hello... - Pelvic Pain Suppo...

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Pelvic pain after surgery

Bubble_by
Bubble_by

Hello everyone!

I've had pelvic pain problems (diagnosed with vulvodynia, vaginismus and endometriosis) for about 8 years now but new to this support group.

I recently had a laparoscopy in March to excise my endometriosis, and I find that my pelvic pain has become worse since then.

I won't be able to do much for it as I have to wait until September (6 months) before I can undergo anything more permanent than painkillers.

I was just wondering if anyone else has also had their pelvic pain worsen after surgery?

20 Replies
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Alaine1
Alaine1Administrator

Hi Bubble_by,

I’ve had this myself after endometriosis surgery. I think the important thing to remember with laparoscopic surgery is that even though the surgery is keyhole so not much to see from the outside a lot of work has been done on the inside which we can’t see. Pain after surgery is very common and usually does settle down within 4-6 months. One thing many of us use is medication that work on the nerves. So although you would have painkillers for your endometriosis pain, after surgery is managed with a combination of both painkillers but long term with using medications such as gabapentin, pregabalin and amitriptyline. I take pregabalin and amitriptyline. It’s not a miracle cure but might help take the edge off your pain. The effects of these medications won’t be instant but you should see some benefit within 6-8 weeks.

Some other tips would be to get referred to a women’s health physio as during pelvic pain of any kind the muscles in the pelvis form tight knots in them. It can be difficult to access via the NHS as there a long waiting times and usually only a few sessions are given. I decided to go private so didn’t need a referral from my consultant or GP. I did spend a lot of time researching the physiotherapist and was extremely happy with my choice. I did get a lot of benefit from it. It is likely I will need to attend again as it’s been about 3 years since I was last seen and I can feel some of the tight pelvic floor pain returning. Many people do get long term benefit but I also have adenomyosis and interstitial cystitis causing my pelvic pain - the pain for all of these is very different to endometriosis and I find it easy to identify them from each other. It’s likely you won’t be able to access any form of physio currently due to the restrictions in place to protect key workers and also yourself. But you can definitely research physios, clinics etc whilst you wait if you go private or if you go via the NHS unfortunately you can’t chose where you go as it’s funded by the GP which means it has to be carried out by your local physio service.

Other things you can do is practice mindfulness meditation. I use the Headspace app but there are plenty of books or sessions on YouTube.

If things are too bad you can definitely ask your GP to consider prescribing some hormones. Progesterone in tablet, injection or implant in the arm are things you can consider especially if you can’t have the combined pill due to migraines or blood clots. If you can have the combined pill the GP can prescribe that as well. Gynaecologists have largely stopped seeing patients as they have been asked to support colleagues in other specialties or on the labour wards so the care of patients with endometriosis or any gynaecological condition is currently with the GP. The GP can however ring the gynaecologist for advice. Most medications for endometriosis take approximately 6 months to settle so if it hasn’t provided much benefit for the first month stick with it and hopefully you should start to see some improvement. Do be afraid to ask for any of these as your specialist wouldn’t want you to be at home suffering. Once September comes around you can easily come off the hormones if your specialist suggests this, but hormone based treatments especially after surgery and for the long term treatment of endometriosis is part of the package. In many women it can actually slow down the progression of endometriosis returning and help reduce your pain long term.

Other key areas to focus on are:

Diet - balanced diet with plenty of fruit and veg, constipation can make pelvic pain worse

Plenty of water as dehydration can contribute towards constipation

Gentle exercise or stretches if you can especially if you are currently at home

Self care - doing things that you enjoy such as face masks, cooking, relaxing baths etc

I hope this helps, but if you need anything let me know and I will do my best to help

Bubble_by
Bubble_by in reply to Alaine1

Thank you for your wonderful reply. It made me feel less alone ❣️ Im currently taking the combined pill (progesterone makes me terribly ill) and it's lessened some symptoms but not all of them.

I've actually been using dilator therapy for two years now (I went private too) and couldn't work out why was the pain getting bad again, but if you say you also have pain returning after 3 years then I guess it can happen to anyone. Hope you can get it sorted soon 🤞

Thank you for your advice - I hope you feel better soon 💕

I’m sorry that you go through this. My pelvic pain changed from location, but is so much worse than before I had surgery on one of my nervus in my sacrum.

Oh no, How awful. I hope you get better soon 🤞

Hi Bubble_by

So sorry to hear i can relate very much here is my story.

Yes me! I had Adenomyosis and had a hysterectomy robotic only to be left in severe pain took a year of my pushing and going from dr being hospitalized several times for severe pain with life threatening blood pressure my pain to developed into necrosis and a 10 cm hemorrhaging cyst and my left ovary attaching to my colon then my bladder to find out my dr cut the artery to my main blood supply to my left ovary was in need of blood supply so it was attaching to organs in need for survival 3 exploratory laps one where they separated my left ovary from my colon only to place my ovary back to its original position. 6 months later screaming in bloody pain they removed the cyst and left ovary still left in pain with a compressed nerve so had decompression surgery which helped but still in chronic pain on specific meds and functional im awating an appt back to neurosurgeon as he helped me to possibly have yet another surgery to decompress more irritated and compressed nerves but with covid its a waiting game so i take very specific meds til then. Im starting on autoimmune meds as my body is attacking the irritated nerve as its been so long its called autoimmune Nueritis ( sp) this is all i have and pray it helps i don't want a 6 th surgery all for the same prob. My advise listen to your body, be your own advocate, learn what you can and push drs cuz they don't care they are overwhelmed.

I wish had kept my adenomyosis cuz i have been in hell for 16 months. Dont do robotic it’s dangerous.

Physio made me worse as pelvic floor was the absolute wrong diagnosis for my case and only hurt me more by causing me spasm from my pelvic to under my chest and nerve block injections only limited relief i had 10. Only to have some relief and pain to return with a vengeance so drs finally realized i had irritated nerves and entrapments which physio only aggravated. We are all different so be careful and don't do physio til you are a 100 percent sure its pelvic floor. Not trying to scare but to empower you. Your body -you push for correct diagnosis. Im so much better then where i was 16 months ago but still in a lot of pain but functional I couldn't get out of bed barely. Now can do so much. But still a long way to go.

You are welcome to pm!

Advocate don’t except what you know may not be what is causing your pain. I don't let anyone touch me. If I do my pain flares. So Im working with my drs now. What happened to me I wouldn’t want for anyone. In the end it was a Nuero surgeon and a Proctologist who helped me Proctology can diagnosis pelvic floor rectally they know the pelvic floor bevause of the colon and many dont know this obgyn’s throw that at you cuz they simply dont know as much as they should i was treated also by a obgyn oncologist who specializes in pelvic structure and know more then simple obgyn cuz they understand the colon too and nuero surgeon as they understand nerve pain or neurologist as well! In the end they saved me. Not to mention my chronic pain dr who knew exactly what to give me to lower my pain to a functional level.

Best to you! Feel free to PM but listen to your gut and body.

Bubble_by
Bubble_by in reply to Pelvic18

Thank you for your reply 🙂

I had a endometriosis operation for 5,5 hours and could not longer sit accept on my knees on a yogabench with a swimmingboard on ot with a hole in it .can t have any pressure on my tailbone. I got pudendal neuralgy from the scars from surgery. I am up and shining for 3 till 4 hours a day they other hours i lay in bed and use painkillers. It s 6 years ago when it happend i learned to cope with the pain and disability and the new reality. But i have good and bad days I move myself with a step scooter and do a little volunteer task. I hope you will recover still and you get better or find a way to cope with it.

Wish you all the best from Holland

Pelvic18
Pelvic18 in reply to willemine

Thank you

Ps i got a lot of effort to listen to Michael Sealey on you tube he does have a pleasant voice and lirics about pain managment or for better sleep. Its a kind of selfhypnosis but its like guided meditations

Bubble_by
Bubble_by in reply to willemine

Thank you for your replies. I will look into him. This might sound like a stupid question but how do you know if its pudendal neuralgy?

Pelvic18
Pelvic18 in reply to willemine

Thank you. Its devestated my life.

I didn t know for 3 years and still its a guess they do a " diagnostic" injection and when you pain free for number of time they say its pn. But i had for a very short amouth of time lesser pain. For me the test doesn t feel relayable because my doctor and a lot of doctors are not sure were to put the injection.

Bubble_by
Bubble_by in reply to willemine

Ah I see, I had botox inj awhile ago and it stopped then... Perhaps I have the same thing 🤔 hope September comes around soon so I can get a more permanent solution

willemine
willemine in reply to Bubble_by

Good to hear botox worked i hope it can work again its a change you have the same you can read about it on pudendalhope site. There you find also that there are many people suffering and there are different aprocces but not many successful. I wish you all the best !!!

Greetings from Holland

Pelvic18
Pelvic18 in reply to Bubble_by

If botox helps its vaginismus. I would botix again. I wish it helped me didn’t

Where did you get the nerve block Willemine? I’m on the list with dr. Schweitzer

It was in holland in a common hospital with a sceptic painspecialist

Dr Schweitzer van het UMC Utrecht en de Bergman clinics is er in gespecialiseerd

O wat jammer dat ik niet doorwezen ben door cinische pijnspecialist in meand eet amersfoort deze had me twee jaar daarvoor al opgegeven voor verbetering.

Het is een schat van een vrouw. Heel inlevend. Probeer een nieuwe verwijzing te krijgen. Bergman Clinics gaat normaalgesproken heel snel. Ze is een gynaecoloog

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