Mum in extreme pain

My Mum has been suffering with a Prolapse for the past 5 months and it has caused incredible amounts of pain. The pain seems to be easier when she first wakes up in the morning - to the point where she says she is completely resolved.

For context, she has been diagnosed with a Stage 2 rectocele and stage 1 uterine prolapse.

The pain came on suddenly in July and has got steadily worse since then.

Her day looks like this:

From around 11am onwards the pain gets steadily worse and the symptoms are:

Bulging

Dragging

Fullness

Itching

Pulling

Tightness

From lunchtime onwards the pain gets incredibly bad to the point where she cannot sit comfortably or concentrate. A hot bath does give a very small amount of relief.

She has seen two top consultants (privately and at a great cost) who cannot understand the level of pain she is given the prolapse. She has been given a pessary, which gave very little relief over a 2 month period.

She suffers with constipation, potentially due to long-term Codeine painkiller use.

She has had a Colonoscopy, CT scan and two pelvic ultra sounds - which were all normal.

Her quality of live has been eroded and it is having a huge impact on her mental state, which is also impacted badly on my Dad and their relationship.

Before this happened, Mum was incredibly active and in a positive mental state.

I am reaching to this group for any advice or help which could be offered during this very difficult time. Thank you so much.

[kalecolbe12]

So it sounds to me like your mom might have pelvic floor dysfunction which is a muscle/ nerve related condition that can be caused from the prolapse and rectocele conditions but it can be caused with other things going on in the pelvic floor too and she or you should ask for her to be referred to a pain clinic and also a pelvic floor physical therapist. II got diagnosed with pelvic floor dysfunction with nerve involvement 3 years ago and believe me the pain can make you go crazy ...I ended up having an anxiety disorder and depression from it Anyway I went to pelvic floor physical therapy for about a year which helped quite a lot but then I was still having some pain so I went to a pain clinic and they put me on a low dose nerve medication and a low dose muscle relaxer both of which have helped enormously I also got a cushion to sit on and it's a wheelchair cushion for people in wheelchairs and it's got a cut out it's a memory gel foam cushion ...I won't sit without it. But she really needs to go to a pain specialist believe me nerve pain medication doesnt erode the body because pain medications do....they also stop the pain or minimize it. And the one I'm on which is Cymbalta it also works for anxiety and depression too so it's helped me so much . I also do meditation breathing exercises and stretching which my pelvic floor PT showed me and tell your mom she needs to go to a councellor it will help our mentally too after she gets the pain under control. She should join the Facebook groups pelvic floor dysfunction support,pudental neuralgia support ,uterine prolapse support and she will see that so many people have this and different modalities that help people. She's getting nowhere right now so she has to get help... Believe me I understand it I've had it also she may need surgery at some point but she needs pain help right now

[Hidden in reply to kalecolbe12]

Thank you so much for taking the time to write such an in-depth response. I have passed this onto mum and it will give her comfort to know she isn’t alone in this. She just feels very helpless at the moment and can’t see it ever getting better.

Once again I am so grateful for your message.

Thank you!

[Glyn8 in reply to kalecolbe12]

Hi. I'm the Mum that Concerned Son is talking about. Thank you SO much for your response. I believe what you have said is exactly right.I have had so many tests and seen 2 top Gynaecologists and a pain doctor and I'm still no further on. They said I could have a rectocele repair and hysterectomy but if it's not that causing my pain I could be left in a worse condition. I can't take that risk.

I'm taking an anti depressant as like you said this causes a great deal of anxiety and depression. Also a low dose of amytripline for nerve pain.

The daily pain is just crippling and sometimes I feel that I can't go on.

It's where to go next. You say you had physiotherapy so I think that should be my next step.

Thank you again for your reply.

[kalecolbe12 in reply to Glyn8]

You're very welcome and yes I think a pelvic floor physical therapist is where you should go ...they understand it so much better than any doctor I've ever known... Please let me know how you get on with everything but maybe a little bit higher dose of amitriptyline or Cymbalta muscle relaxer Gabapentin some of these might help

[Lurcher-lady in reply to Glyn8]

having similar problems although not so much pain, just discomfort that worsens through the day. I’m using Kegel8 machine and while it doesn’t do much in the beginning, does assist with pelvic floor dysfunction. I’m also on a weight loss regime. Hope this helps.

[Heartof3 in reply to Glyn8]

How are you feeling? I feel your pain 😞 it's awful. I am also waiting for a hysterectomy and a repair x

[Glyn8 in reply to Heartof3]

Hi. I have a lot of continuous pain from mid morning until bed. It resolves overnight so I get up pain free for a couple hours. Then it all starts again. I'm scared to have the operation as may be I have other issues going on with pelvic floor dysfunction and constipation. I'm going to see a pelvic floor physiotherapist today to see what she says. Can I ask you what your symptoms are like? x

[Heartof3 in reply to Glyn8]

Oh, bless you. I am am exactly the same, pain gets worse as the day goes on & really kicks in at night.

I have pressure pain in my pelvis, back & around my private areas, sometimes it almost feels as if it's burning. I feel like there's something sitting there that needs to be pushed out.almost like labour. I often feel like I need a poo, but nothing comes out, except my prolapse 😣

When I'm due on my period & ovulating, it feels like my right ovary is being stabbed. The pain can also really ache down to my knees.

I also get alot of trapped wind. I have to be mindful of what i eat.

the Only thing that takes the edge off it is a hot bath & hot water bottle.

The pain is just life ruling, isn't it. i miss my past active life so much. I can imagine you do, too 😣 Xx

[Glyn8 in reply to Heartof3]

Oh my goodness, you could be describing me! Everything you say. From the burning to hot water bottle and hot baths. Everything. I really feel for you, I know exactly what you're going through. You mourn the active life you had don't you, its so distressing and the pain takes over every aspect of your life 😔Can I ask what stage prolapses you have? Have you tried a Pessary? Or can I private message you? xx

[Heartof3 in reply to Glyn8]

Ah bless you. Although I wouldn't wish this on anyone, it's nice to know we're not alone🙏❣️

Ask me anything & feel free to message me anytime.

I had a posterior repair 2 years ago. Before the repair I worked hard with physio for a year & even tried the pessary, but it was too uncomfortable. unfortunately my prolapse got worse & I was referred for the surgery. Although the surgery helped me poo easier & tidy the area up & remove the buldge from my private area, it never fully got rid of the pain, only like 40% of it. A year ago I had a lap, which I was also diagnosed with adenomyosis, the pain got so bad I was put on the wait list for a hysterectomy.

Anyway, I had recently got over a bad case of flu, through constant coughing,I now have another bowel prolapse & the pain is ruling my life. I am constantly aware of it. Even a walk to the shop leaves me with a feeling of chronic tooth ache , but in my womb & back. It's bloody awful isn't it 😢

My doctor said my Pelvic floor dysfunction is struggling to hold everything up. But I do my Pelvic floor exercises every day.

All the guess work & pain is physically & mentally draining, isn't it xx

[Glyn8 in reply to Heartof3]

Thank you for your reply. You describe symptoms exactly as I do, the burning, like its toothache and labour pain. It is life ruling and its awful. I say this to gynaecologists and they look at me as if I'm mad. Rectoceles don't cause these symptoms apparently!!I will definitely private message you... Thank you xx

[Heartof3 in reply to Glyn8]

If only we could transfer our pain on to them, then they would understand.Anytime xx

[Glyn8 in reply to Heartof3]

Hi. I have a lot of continuous pain from mid morning until bed. It resolves overnight so I get up pain free for a couple hours. Then it all starts again. I'm scared to have the operation as may be I have other issues going on with pelvic floor dysfunction and constipation. I'm going to see a pelvic floor physiotherapist today to see what she says. Can I ask you what your symptoms are like? x

[Wxm22]

Has your mum seen a private pelvic floor physio. They can help with prolapse and also constipation has an effect on everything. Just a thought.

[Hidden in reply to Wxm22]

Hi, she has been to see a physio but not one that specialises in pelvic floor. There is a private physio she can see but want sure the benefit they would give. I’ll ask her to book an appointment as it sounds like (with the other response I got) that it would help.

Thank you so much for taking the time to respond.

[Wxm22 in reply to Hidden]

your support will mean so much to your mum. Just make sure its is a Womens Health/pelvic floor specialist

[giggy63]

Hi. Your mom could try the prolapse sponges or menstrual sponges. They been a lifesaver for me when i couldnt get my usual inflataball pessary due to a latex shortage. They just made from natural sponge and so easy to use. They take all the heavy dragging feeling away so well worth a try. Good luck.

[Hidden in reply to giggy63]

Thank you so much.. I will pass that on to her.

[Skye22]

Sorry to hear your mum is having problems with pain and discomfort.I have constipated colitis, slow transit colon and rectocele. Having a normal bowel motion is impossible for me.

What changed my life was getting to see a women's specialist bowel and bladder physio. She organised a plethora of tests and organised a comprehensive care plan.

She supports me with daily transanal irrigation bit complicated at the beginning but now part of my daily routine which helps with bowel movement. she also performs internal/external vaginal trigger point therapy which really helps with painful rectocele spasms.

I also visit a specialist urogynecologist who gives me Botox injections into pelvic floor every 3mths. It is a painful procedure but it helps to relax painful muscle spasm and allows me to sit properly by relaxing the pressure from rectocele.

These treatments for me do not eradicate symptoms more make them more bearable.

I would like to say that it is very admirable of you to help and support your mum with these debilitating symptoms. I also have great support from family and just having someone to listen and understand what you are going through makes a HUGE difference.

I really hope your mum can get the proper medical help that is right for her.

[Hidden in reply to Skye22]

Thank you very much for taking the time to reply and I am so sorry you have suffered so much too. I will pass on the advice to mum.. thank you again!

[parivash]

sorry to hear your mum is in so much pain. Has she had an mri of her pelvis? I had prolapse for years and then had a procedure unrelated which caused a muscle of my pelvic floor to detach from the bone. The pain was completely debilitating. It was easier first thing in morning but got steadily worse as day went on. I couldn’t sit down for any length of time and spent 6 months lying on my bed for most of day. This damage to the muscle is causing a nerve to be irritated, probably pudendal nerve. Took 2 gynaecologist and 2 pain specialists to get any answers. I take painkillers and have physio which has allowed me to get some sort of normal back but don’t think it will ever be cured.

[Hidden in reply to parivash]

Thank you so much for this and sorry you are still in pain and discomfort. Mum had had a pelvis MRI and that came back normal, which is good in a way but also frustrating as we hoped it would give some answers.

[Giraffe4]

Hi ,

So sorry to hear about your Mum , I find that constipation makes my prolapse worse and take movicol daily , I hope she finds relief soon ,as I know the pain can be so hard. I also fond laying with my legs up helps !

[Miriam123]

I was in same condition as your Mom and male doctors and consultants said prolapse is not that painful! Believe me it can be incredibly painful. I went through all other tests, colonoscopy, bladder, uti etc all normal. Finally a female consultant who listened. It was a prolapse. She repaired it for me. It was like a miracle, the first time I got out of bed a few hours after surgery the pain and that dragging heaviness was gone. It took a few weeks to completely heal but I am now completely pain free. I'm 83 so not exactly a young woman and I did very well after surgery. For now, laxido everyday is a good suggestion since constipation is an aggravating factor. Hope your Mom gets the help she needs.

[Glyn8 in reply to Miriam123]

Thank you for your response. Can I ask what sort of prolapse you had repaired? Thank you.

[Miriam123 in reply to Glyn8]

I had a rectocele and a cystocele both repaired with 6 months between surgeries. I had already had a hysterectomy many years before.

[Glyn8 in reply to Miriam123]

Thank you Miriam123.Can I ask you what your symptoms were with the prolapses? Doctors seem so determined that my description of my pain is not typical of prolapse! I'm sure they are causing my problems. Thank you

[Miriam123 in reply to Glyn8]

Heavy, dragging pain in pelvic area, back ache, constipation, difficult bowel movements, having to stand up to pee eventually. Really bad at night when lying down, no respite really. Had all the tests, was told by male doctor it was diverticulitis even though I had a colonoscopy which would have shown this if it were so. Constipation is a big factor in the occurrence of prolapse. So if this has been a problem in the past then your pain could very well be prolapse. I had a female gynecologist so she was very familiar with prolapse and was a good listener. Hope you can get this resolved soon.Best wishes.

[pizon]

I agree with Miriam123..I too had the corrective surgery and it got rid of the dragging feeling and the feeling of my insides falling out with each step that I took..my pain was mostly due to upon the prolapse it didnsome nerve damage and the Dr. I saw who was a specialist (uro gyn)… was not familiar with pundel neuralgia so I suggest going to a sergeant who is also familiar with pelvic nerve issues…and a physio helped me very much…yoga and meditation have helped me to stay away from the medications that are constapating ..

[Schroedie]

Just a thought. I was diagnosed when I lived in Gloucestershire where, frankly, the NHS gynae depts were hopeless. Couldn't care less and surgery was the only option. I moved to Cornwall where it was completely different. I was offered physio, had several sessions which covered lifestyle, diet, exercise etc, and they said surgery was the last option not the first. They really helped me manage my prolapse.

So if you can, try a different health provider - each area seems to have a very different policy and you might strike it lucky.

[Whysodifficult]

someone said sponge pessories .. which they sowed a string on to for easy removal to clean.. I think it was bought online .. worth a try..?