Bladder Prolapse that's not

[LoopyLou72]

I could cry. Apparently there's no prolapse so god knows what's going on down there. They're booking me in for a procedure where they can have a good look in the womb and want to do a biopsy at the same time. I'll then go back to work out the next plan but hysterectomy would be too risky and the other possibility is to heat blast the womb to get rid of the lining. The urologist will need to deal with all other issues relating to the bladder including the feelings down below and increase in problems peeing. It just means there'll be no resolve until UCLH. He banged on about NICE guidelines not mentioning contraception and Hypermobility so I popped onto the website to prove I was right. I think he was a bit gobsmacked. He had to take advice from another consultant and will read up on the documents I showed him. Xx

[EOLHPC]

Am so sorry it doesn't look as if there will be a simple diagnosis to this...but I so admire the way you're holding your own with these medics (would've loved to be there when you took them for education on the website!).  Hang in there, loopylou!  I hope you get a really good urologist: I expected a bad experience, but she has turned out to be lovely & is making all the diff to me...please keep the news flashes coming in

🍀🍀🍀🍀 coco

[LoopyLou72 in reply to EOLHPC]

Hi Coco,

Having spent a lot of yesterday in tears, through a whole mixture of emotions, I got a call from the GP last night who agreed to send an updated letter to the Urologist advising him of the increasing difficulties. He said there's nothing they can do for me and the only advice was that if I go into full retention then it's a trip to A&E. I asked about being trained to self catheterise in the interim, whilst I await my next appointment, but he said the current Urologist will need to make that decision.

I managed only 3hrs sleep last night and decided to do some additional research. I had severe SPD in pregnancy and as a result have a very unstable pelvis and problems with the SI joints and pain in hips and groin etc. This had worsened since whatever recently went wrong down below. I've found that SPD and Pelvic Girdle Pain can be diagnosed after pregnancy and it can also cause bowel and bladder dysfunction. 

I'm not sure how to approach the GP with this but it could explain what I'm currently experiencing.

As you can imagine I have lost faith in those that appear not to understand or appreciate what I'm going through and I'm slightly fed up of hearing that I'm too complicated a case.

I'm going to post separately regarding this to see if anyone else has had the same or similar difficulties.

It could also explain why I've had such difficulty with sitting and standing. The only thing that is different is that I can pull my legs apart to a certain degree without severe pain but all the other pains are the same. 

I think I backed the consultant into a corner regarding the link between contraceptives and joint laxity but was so cross with him spouting about NICE guidelines and there being no mention of Hypermobility I felt it was necessary. I may have just helped the next person with a Hypermobilty Syndrome that he comes across. 😊

Take care and I hope you have a good day today.

Lou. Xx

[EOLHPC in reply to LoopyLou72]

You are amazing loopylou: even at your lowest, you're analysing with great skill + strategising & figuring out tactics that are right for the real world of healthcare here today. 👍  Am greatly feeling for you!  Am certain you'll figure out how to get what you need to keep your bod as functional as it can be in our world of connective tissue wonkiness.  Am looking forward to reading your separate post. 🍀😘

[cyberbarn]

It sounds like you are actually making progress now! It will be slow, because medicine isn't just a science, it is an art too. 

As for NICE guidelines, I am hoping that someone at EDS UK keeps an eye on them and that they are registered stakeholders. When I was involved more heavily in Autism support our group were registered stakeholders which meant we could comment on any NICE guidance in development. This is the sort of thing that NICE might miss as there is so much data and information out there. It can be hard for them to get all of it together. 

[LoopyLou72]

Another update for you all.

I was in so much pain last night/this morning that I contacted the 111 service in desperation for advice. They were brilliant. 😊 They contacted the out of hours service who called me and I got an appointment this afternoon.

Diagnosis is a severe bladder infection so on more antibiotics. She was concerned at how worn out I looked and prescribed some sleeping meds to help why the infection is there.

During the consultation I mentioned the issues, the prolapse not prolapse, that seemed to occur prior to everything going more wrong. I explained that the GP had felt inside with two fingers first and then followed with the speculum. The gynaecologist though had only gone in with the speculum. She explained that the speculum may have pushed the prolapse to the side and as you can't see through a speculum the gynae could have missed it completely.

She's advised that I see my usual GP on Monday, strangely who share the same reception as my GP surgery, to discuss the prolapse further and to request a referral to the continence service again.

So it's gone from I've got a prolapse, I haven't got one, to I might have one.

She said I certainly couldn't wait until the end of June for anything to be done and has written notes so my GP is aware for Monday.

It's a shame she's not a doctor at the practice.

I have spent the day with a friend, who came with me to the appointment, as I didn't think I could go through another on my own especially with how tearful I've been.

I'm now looking forward to some sleep so will say goodnight and I'm hoping the meds work to aid sleep.

I wish you all well,

Lou. Xx

[LoopyLou72]

Yet another update. 😉

The sleeping meds should have been instant so she's told me not to take any more. She thinks all the additional pains to the joints is due to the bladder system not functioning properly and has confirmed that a letter has been sent to UCLH requesting an appointment as soon as possible. She agreed that current pain meds are likely not working so to reduce them to wean off. She's asked me to come back in two weeks to discuss pain relief options and other things that couldn't be covered today as its one thing at a time and pain relief is up next. She wants me on rest for two weeks at home to give the body a chance to get some recovery time. I ended up in tears due to the frustration of it all but my condition is too complex. Xx

[Whatnext1]

I had the lining of the womb removed many years back because of fibroids and heavy bleeding and it did work incredibly well for me, so hopefully that bit will help you a lot but it sounds as though you've got more going on there.   I have heard that there are gynie specialists who also specialise in hypermobility, in London, but I don't know where you are.  I discovered about them on the Inspire Ehlers Danlos site, so if you wanted to find one, you could ask on there?

[LoopyLou72 in reply to Whatnext1]

I've been trying to get referred to the unit at UCLH so that my care can be under one roof for everything. It would also mean that any surgeries would be advised with knowledge of the Hypermobility side. I have a rheumatologist appointment in May, one whole year since referral, as it's only a consultant that can refer as I live in Essex. I'm pleased that procedure worked for you and I'm hoping for a similar resolve on the gynae side. Xx

[Whatnext1 in reply to LoopyLou72]

It's been so difficult for you, hasn't it.  But I hope each step will take you forward now.  But yes, do be encouraged that the removal of the uterus lining does work so well for excess bleeding and fibroids!

[LoopyLou72 in reply to Whatnext1]

Thank you as I've not known anyone have it done so you've made me feel less anxious knowing it should be okay. Xx

[Whatnext1]

Good:-))))  I certainly had nothing but a huge improvement from it:-))))  And I mean HUGE - it transformed my life really!

[LoopyLou72 in reply to Whatnext1]

I've just received an appointment for a Hysteroscopy on the 26th May. At least I know they haven't forgotten me. If I can have some relief from knowing they can sort that part then it leaves me with urology and Gastro. I'm getting somewhere which is positive. I hope if they do for me what they have for you then it stands a chance of making a huge difference. Xx 

[Whatnext1]

Have you had one before?  If you haven't, my suggestion would be to take a valium and Ibuprofen (you can ask your doctor about the valium - there shouldn't be a problem getting it) an hour before it's due.  Some women don't find it painful, but some do, and I took valium and Ibuprofen before I went for my appointment.

[LoopyLou72 in reply to Whatnext1]

I haven't had it before but pain meds don't work for me. I've also noticed they have said they may need to use a local anaesthetic which is a concern as that doesn't work either. I've never had Valium but Diazepam didn't touch me. I'm not sure what to do now. I usually get given general anaesthetic for anything that's likely to cause pain. Xx

[Whatnext1]

That is so good that they've mentioned a local, at least.  But you need to tell them that because of the Ehlers Danlos, locals don't work for you (it's common with EDS, but I don't have that aspect - a lot of EDS people find that with dental treatment) so ask them what they suggest.  When I had mine I went to the office, fully dosed up, as I said, for it to be done, but then they discovered that my cervix was fully closed and sealed, so there was no way they could do it and so they sent me for a general anaesthetic for it to be done in theatre.  I gather that many women have it done without any pain prevention at all and nothing was mentioned to me about pain prevention.  I'd just read it on a group, so that's why I took the tablets before I went.  So your doctor sounds one step ahead of mine, even mentioning a local!   I'd suggest giving the secretary a ring and telling them that a local won't work for you, so what do they suggest.  This is a total guess, but my guess would be that they'll see if they can do it without stressing you, and if they can't, then suggest a general, but you don't want a general if you can avoid it and it might be so straightforward that it's not a problem.  But I think talking to the secretary about it might ease your mind?

[LoopyLou72 in reply to Whatnext1]

I think you're probably right. On paper I'm diagnosed JHS but have been trying to get it upgraded to EDS but it's been nearly a year since the referral to rheumatology. Annoyingly the Rheumy appointment is two days before this one. It's on my records that local doesn't work, and the same issue with meds dispersing too quickly to be effective, but they've probably not taken that into consideration. The hospital sent out a booklet explaining the procedure and what to expect. It says to contact the nurse with any concerns. I'm wondering whether gas and air, entinox I think it is, would be an option as that was the only pain relief, if you can call it that, that was used when I gave birth to my boys. A general anaesthetic would concern me as I've already been pencilled in for surgery in June with the Urologist. I've waited years to be taken seriously and there's a lot happening at once now. I tried to explained to the gynae that JHS and HEDS are now considered to be one of the same but he seemed to know better as said my syndrome is not to do with connective tissue. I guess that's why an EDS diagnosis is so important to me as I need it on paper. Thanks so much for your advice as its better to call ahead than to get there to find they can't do it. I passed out after they did a Cystoscopy with local and urethral dilation at the same time. I got through the procedure but the pain was too much. That urologist didn't believe me either until that happened. I'll call tomorrow as I dint want to hold anything up. I'm hoping they will relook at this big lump inside too as its currently extremely sore and has been bleeding. I know there's no fibroids or cysts in the opening as they did an internal examination for that but going into the womb and doing a biopsy is well has me crossing my legs already. 

Thanks again,

Lou. Xx

[Whatnext1 in reply to LoopyLou72]

That's interesting because I was told that they were the same thing.  See this link: hypermobility.org/help-advi...   I'm sorry to hear the Cystoscopy was so bad and I think that's a good reason to contact them beforehand and know that the EDS is being taken into account and they've got 'a plan'  I do hope it all goes well though.  Do let us know, and if there are any questions I can help with from my limited experience, do ask!

[LoopyLou72 in reply to Whatnext1]

I'll be in touch. 😉

It does depend on who you so but I'm now using them together in the hope if they don't know one then they'll know the other. 

Take care and thank you so much for your help and advice. I'll update soon,

Lou. Xx

[budgiefriend]

I just happened to be looking for info on prolapse today, and one video I saw from a consultant said, that if they tell you it's not a prolapse, and they have not looked for one with you standing up, they may be mistaken. If they can see it when gravity is pulling it downward, then they may understand what is going on down there. I hope this helps.

[LoopyLou72 in reply to budgiefriend]

Thank you budgiefriend. 3 years on its been a long road but I’m now under a London hospital and they confirmed it straight away. They put me through a specialised mri scan which found lots of other issues too in all systems. The pessaries have been interesting and the last one, the most robust they have, fell out during a bowel movement. Prolapse has worsened and clearly visible but surgery isn’t possible due to the EDS. Now looking at urostomy, ileostomy and possibly a hysterectomy, as the issues need to be bypassed. A long road ahead but being validated was so important. Definitely an upright test would have been key and although I requested that in the beginning it was very much ignored. X

[budgiefriend]

I know all too well about requests and sensible suggestions being totally ignored. I am really glad you are getting the attention you need. It must be very difficult to deal with all the related issues. Bless you . I hope you come to a much healthier and more stable place through all the treatment.