Pelvic Organ Prolapse (Rectocele) and Complications. I am only 36 😢

[Queenie1985]

Suffering with pelvic organ prolapse (grade 3 rectocele). I am only 36 and have Ehlers-Danlos syndrome and a mis-managed labour in 2018.

I saw a hospital Doctor in December 2021 who told me I had a huge kidney infection due to the rectocele and that my GP would refer me to a gynaecologist within 2 weeks. (I needed 2 lots of antibiotics to clear it up).

I saw my GP, she fat shamed me, (I have actually lost nearly 3 stone since last September) said it wasn’t too bad and referred me for a routine appointment. She has not offered me any other help. I put in a complaint about her fat shaming me and not taking into account my mismanaged labour or hEDS, and I was seething she went against a hospital Doctors recommendations of an urgent appointment. I also take blood thinners for blood clotting issues and I am told I could be at risk of a big bleed if the prolapse has complications.

I am still waiting to see a gynaecologist after 5 months. I have had several more urine infections, bleeding and pain. This thing is nearly out of my vagina, it rubs against my underwear. I have been unable to have sex for 6 months. I have chronic constipation and anal leakage.

I am severely depressed and I feel really uncared for. My hospital cancelled my first appt last month on the DAY, my husband had taken a day off work so I could go to this. Every appointment they have offered me since I have no childcare and I have been forced to cancel the appointment altogether. My kids have special needs and we have no family near, my childminder has gone on maternity leave. What do they expect me to do?

My husband is unwilling to take another day off because he does not trust the hospital not to cancel again. I would like to get re-referred and go to another hospital in a different county, but I have been told by a Receptionist at my surgery that I will get penalised for cancelling the existing appointment and they will likely be unwilling to refer me again. Can they actually be that petty or refuse to refer a patient?

What can I do? Shall I ask to see a different GP? I asked to have a ring pessary fitted next week as I am totally fed up, but I have been told that this will likely not work for me, and it is with the same Doctor I put a complaint in about so I am not looking forward to that 😫

I already struggle with anxiety about my health, I have PTSD due to previous health issues which were not diagnosed quick enough by my Doctors, and I almost died on 3 occasions. I literally don’t trust my GP and my anxiety is through the roof.

[Desperateforrelief]

I am so sorry for your suffering. I live in the USA, so I don't understand how your medical system works. I will say we are also seeing this kind of thing happen in the USA. We are still free to see other doctors if we want to. They are not in the same practice so we can get different opinions. I understand why you feel like you do. I almost died from sepsis (from UTI) in 2014. I had talked to the doctor a 1/2 week before and was told to just give the antibiotics a chance to work. I had already been infected for over a month. I wish I could give you advice, in the US I'd say get to another doctor ASAP. This is unconscionable. It is amazing to me that before I had transvaginal mesh, stress urinary incontinence was absolutely horrible and it was the professions goal to fix it all so women didn't have a poor quality of life. Afterwards, my condition much worse due to mesh complications, there is nothing anyone can do. So I live with prolapse and urinary/bowel incontinence. I feel for you. I hope someone can help you.

[jmdb]

Hi! Of course you are worried and frightened. Living with a prolapse is challenging for anyone. You are a busy mum with EDS and that is a huge challenge. So try and deal with the things that you can do something about whilst waiting for the bigger issues to be resolved. Constipation will aggravate your rectocele. Your GP should have prescribed a laxative. In the meantime ask your pharmacist about what to take. Do tell them about EDS and any medications you already take.

Try and find someone who might be able to help with childcare for when you have appointments. I appreciate this isn’t easy as you say your children have special needs. Are they in school or pre-school? Someone on the staff may know of a child minder who would be willing to help.

Do pelvic floor exercises daily. This can help! Go on You Tube and look for FemFusion or Kegels. Follow the instructions. It takes a while of doing the exercises daily but you will feel the difference. I know you are busy mum but you need to find the time to do this to help your condition.

It is frustrating when appointments are cancelled at the last minute but the covid situation means that the staff situation can change from one minute to the next. Hopefully things will improve.

Most importantly I think you need to see your EDS consultant. This is a very complex condition as you know. Your consultant will know how someone with EDS should be supported when they have prolapse problems.

Take care.

[mich in reply to jmdb]

Pelvic floor excersices can make things worse for some people. There is no scientific research to say how or if they work I don't think unless things have changed.

Queenie I really feel for you. I am sick to death of doctors and specialist nurses telling women, its not too bad!!!! How do they know it feels as a women says it does and this should be the gauge used by professionals.

Women can have prolapses dropping out and it not bother them while others have " mild ones" and it destroys their lives....

I cannot express to you the fight I had , the fact they make you feel you are going mad etc etc one of the proffessors even told me I needed a psychiatrist....

I think gynae services can be misogynistic, and abusive to say the very least....I am so sure that they need to be overhauled ASAP.

You have been an assertive women and you are unfortunately,it appears, getting appalling payback treatment!!!! How dare a women even suggest what is wrong with her own body, what ever next!

This is an area of healthcare that is in dire straights , it needs a rapid overhaul etc.

Some women do not have a partner to earn the money so they can stop working due to prolapse pain discomfort and ruined excretion processes, incontinence is NOT normal or acceptable.

Good luck and definately change GP to one who is proffessional, clinically adept and above all kind and caring. After all, we pay for our NHS, our doctors training etc etc.

[MOLLYMILO007]

Hi there no woman should suffer with pelvic floor pain...I had a repair 3 months ago as had a bladder prolapse I've got to add it takes some recovery ..I expected to be fine by 6 weeks no way its taken 3 months..sex is quite uncomfortable so I'm trying vagifem pesseries ...however I feel if you can afford it go to a private hospital to see a gynie its costs around 150 maybe cheaper its 95 for me I'm blackpool ...u don't need to go through your gp just phone up spire if you have one and ask to see a gynecologist..they have the time to sit and listen and put a plan of action in place if you need a prolapse repair and cannot afford it then asked to be referred by NHS...at least you will be on the waiting list ...have u tried a kegal 8 to help you until you decide if you want surgery...hope this helps its a very scary thing buy with the right gynie you will feel at least you are being heard ...Good luck my love ..jeanette