This is a bit of a cry for help as I really don't know what to do.
Since 2017 I've gone through hospital episodes including PID, twisted fallopian tube requiring emergency surgery and ovarian cysts. Since Jun 2019 I'm been suffering from cyclical acute pain spells, focusing lower abdomen (pelvic) and radiating to my lower back.
Last summer I had an exploratory lap which didn't show anything out of the ordinary and they discharged me saying 'come back if it gets worse', I then fought for a second opinion who carried out an MRI which showed a very small patch of adenomyosis on the wall of my uterus which she's said couldn't be causing the amount of pain I'm in - she put me on zoldex injections and HRT for 6 months but it just exacerbated the pain. They've ruled out endometriosis, fibroids and cysts and they're now going to do a hysteroscopy in a last attempt to find a gynae cause of the pain.
Given my history and the location of the pain I'm sure this is gynecological, but the amount of pain I'm in and the lack of diagnosis is having a severe affect on my mental health. I need some help.
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Chronic91
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I’m sorry to hear that you are suffering so much at the moment. Even with a history of cysts it doesn’t necessarily mean that the pain you are experiencing is gynae in nature. Cysts are extremely common and most women will have had one episode at least. Most are functional and require no treatment as they resolve on their own. There are some that don’t but these are associated with severe endometriosis.
Your gynae is right that a small patch of adenomyosis wouldn’t cause extreme pain as the severity of disease is linked to amount of adenomyosis present. Endometriosis symptoms and pain however show no correlation to anount of disease present. It’s pretty confusing! Also there is no evidence to suggest that a small amount of adenomyosis will increase over time. Many think that with endometriosis and adenomyosis you are programmed at birth to have mild, moderate or severe disease. I’m on long term zoladex for severe adenomyosis which has failed all treatments and it’s also helping with my endometriosis. You’ve mentioned the pain is cyclical but that doesn’t mean it’s automatically a gynae issue. Many chronic illnesses respond to the hormone cycle so during a period someone with crohns for instance can get worsening symptoms which would give the opinion it’s a gynae issue when in fact it’s an autoimmune disease issue. Another example is IBS where the the woman will only get IBS during her period only and be symptom free the rest of the time. This to the untrained eye would give the impression that the women might have endometriosis that is affecting her bowels when in fact it’s not the case.
I’m my case I have two gynae cases of pelvic pain- endometriosis and adenomyosis and one non gynae - painful bladder syndrome/interstitial cystitis which in my case shows no effect of hormones although many women find that they get flare ups around their periods.
One of the confusing things about bladder pain is that many women will say they are sure it’s gynae pain and not bladder pain. The uterus is situated just above bladder so can sometimes give the impression it’s coming from the uterus. It after a hysteroscopy nothing is found you might have to accept that no underlying cause is found that explains your pain.In many ways this is a comfort as endometriosis and severe adenomyosis are awful to live with. However all is not lost and it doesn’t stop you from receiving treatment that can treat your pain. This is referred to as chronic pelvic pain which in this case would be the diagnosis whereas someone with endometriosis would have chronic pelvic pain caused by endometriosis. It’s a subtle but important difference.
Below is what I wrote recently in a reply to Verno who like you was left in pain. I’ve included a lot of recommendations which I’ve done myself. One of the key points about treating any type of pain is having a range of options to use. It might be paying for some of this yourself - physiotherapy which I would definitely recommend and did help my back pain which had a gynae and non gynae set of causes. Physiotherapists are often very good at treating pain and recommending treatment options as they are the only health care professionals that get trained in pain management at undergraduate level. Trainee doctors only have a few hours by the time they have qualified from their undergraduate degree.
‘Hi Verno,
I’m sorry to hear of your pain which seems as though it’s agonising. You have my full sympathy as I know what that’s like. Please see the reply in bold below I wrote yesterday to another member about her prolapse. I’ve modified it a little as you haven’t mentioned your age and if you’ve had any pregnancies at any time, although prolapses can still occur in women who’ve Sadly never carried a child to full term or simply never been pregnant. There is also a link to the RCOG leaflet on prolapse which is useful. You don’t say whether you’ve had any treatment at all including lifestyle changes, physiotherapy etc. Long term being on strong pain medication isn’t something that is actively encouraged especially when there is a range of treatment options. At the moment the pain medications are essential for you but what’s really needed is a solution for you. Have you been referred for physiotherapy and/or gynaecology?
I’m sorry to hear of your suffering and frustration over your prolapse. Firstly there is a range of treatments for prolapse and will depend on the severity that the medical professionals identify. As with all medical conditions there are first and second line and third line treatments that come with an increasing risk of side effects and potential complications. Unless surgery is the only option left due to severity a patient is usually expected to to start on first line treatments first which for prolapse are lifestyle changes and physiotherapy. The physiotherapy needs to have been carried out for a reasonable length of time to see if it would be of benefit. I’ve included the information leaflet from the RCOG in the link below.
rcog.org.uk/globalassets/do...
With the referral for the gynaecologist there are a few points to make. The 18 week time frame from referral to being seen isn’t an absolute guarantee of being seen within 18 weeks plus you need to allow your GP another week to have actioned the referral as they will also have other patients to refer to various specialists including the 2 week wait pathway. If the consultant you have been referred to has other patients who have symptoms that they believe need urgent treatment they will be seen first. An example of this is perhaps an unusual cancer that the GP might have overlooked as they rarely see it in general practice. Plus if the consultant doesn’t believe you need to be seen quickly you can be expected to wait longer than 18 weeks.
With COVID 19 the entire NHS was turned upside down with all patients appts both new and follow up severely affected as well as surgeries. Gynaecologists who often work as obstetricians as well we’re having to work on the labour ward and delivery rooms all of the time, even non obstetrician qualified gynaecologists were working on the labour wards or working directly with COVID patients. Many medical professionals and physiotherapists who also were working with these patients were often having to cover for colleagues who might have been self isolating after having come into contact with a COVID patient in an outpatient clinic before the lockdown and PPE regulations came into effect. Others couldn’t work as they may have been shielding due to medical reasons and that on its own comes with a who host of problems as I realise as I’ve been shielded myself due to medical reasons and also medications taken. This means that the NHS workforce was considerably smaller than normal and resources overstretched. All outpatient clinics were cancelled including many cancer services especially in London. The only exception was maternity although some of these were done via the phone and paediatrics (not all paediatric cases were seen) Some smaller NHS trusts were able to run these but most surgeries were cancelled completely which has meant some cancer patients have gone from being treatable to terminal especially if the cancer is aggressive. Private hospitals also were in the same boat as most consultants are from the NHS and they were working exclusively for the NHS during the pandemic and surgeries here weren’t going ahead either.
When the lockdown began to ease and surgeries were resumed it was agreed that cancer patients must come first especially with the delay in chemotherapy/radiotherapy treatments and surgeries. Once this was underway and the backlog caught up then routine surgery could be restarted. But remember as routine surgery has only restarted in the last 3-4 weeks patients whose surgery was cancelled in March and early April are only just being operated on now. When patients whose surgery was cancelled in June/July they might be waiting until December at least. This all depends if we have another national or regional set of lockdowns.
I myself have been affected badly by all of this. I’ve had ongoing treatment cancelled that I need at the hospital every 3 weeks, 9 different consultants cancel their follow up appts with me and some haven’t been able to reschedule just yet. One of them is at Moorfields the eye hospital which doesn’t even treat COVID patients but I’m guessing they might have gone to other NHS trusts to help out with COVID patients.
There is always the risk that the gynaecologist you have been referred to won’t do anything unless you have completed 6 months of physiotherapy especially if you haven’t already been seen by one already and they feel that your prolapse might benefit from it seeing that you are in a younger age group. Whilst the body is fantastic and generally adapts very well it can sometimes take a while for some things. At the moment there will be even longer waits to see a Women’s health physiotherapist not just due to COVID but largely because there simply aren’t enough of them for all the patients waiting to be seen. I found this out myself and decided to go private for pelvic pain and pelvic floor dysfunction caused by endometriosis, adenomyosis and painful bladder syndrome and for me it was the right decision. Not all doctors even many gynaecologists are poor at testing pelvic floor muscles for tightness and weakness! Although my muscles were largely too tight I did have a slight weakness on my left side. I had to carry out a range of daily exercises which I did first thing in the morning. Going private allows you to self refer and you are seen quickly. These physiotherapists don’t tend to work with the NHS but are solely private working. I was seen within 5 days of me contacting the clinic and she was better qualified than many NHS physiotherapists. I’m just wondering whether it would be a good idea for you to see a physiotherapist privately as Women’s health physiotherapy also looks after women who’ve never been or aren’t pregnant as well as women both pre and after birth. She would be able to see and access the degree of prolapse you have, whether there is any chance of success with physiotherapy and can in some cases write to your gynaecologist so other options can be discussed at your initial consultation. Mine WH physio wrote to my urologist about a quicker follow up so it does work. Saying that some won’t but most are happy to work alongside NHS consultants. Also if you decide to have treatment with the physio by the time you are seen it’s likely you will have completed 3-4 months of physio both in the clinic and also at home. I’m also wondering if it’s possible for you to contact the midwifery team and ask to be referred especially by the time you’d given birth we were lockdown so you couldn’t be seen by an NHS physio. It might be worth a try as I know fertility services although unrelated to you have extended there age restrictions by 6 months to take into consideration the effect of the lockdown.
I’m also wondering if the affect of the lockdown has had a negative effect on you. I know I’ve suffered as have many other without any medical conditions. Have you spoken to your GP or practice nurse? They might suggest treatment or simply keeping an eye on you to make sure you are ok. Depression of any kind is awful and is nothing to be ashamed of. Have you tried mindfulness? I was introduced to it by my endometriosis specialist and it does help. I use Headspace but there are loads of apps, YouTube videos out there etc.
Make time for yourself, even if it’s treating yourself to a new hand cream. It doesn’t have to be big and grand gestures but even small ones can have the same effect. It’s important to look after yourself. It might be that a friend or relative looks after your children for a few hours so you can go window shopping, go to the hairdressers etc. Whatever you need to do.
Summary
You will be seen at the hospital but there is a backlog for all specialties including gynaecology to get through. Don’t worry you won’t be forgotten. A and E unfortunately isn’t the place for you to be seen though.
Read through the handout which you can access via the link or you can copy and paste into the search engine.
Consider going for a private physiotherapy session even just for advice
If depression is a problem reach out to the GP or practice nurse. You won’t be the only person they’ve seen that day. Depression rates have skyrocketed during the lockdown in all age groups and genders.
Don’t forget to look after yourself. You are still you not just mum/employee etc and have to give yourself some me time. It’s not selfish it’s essential!
Lastly we are all here for you, myself included so if you need any further advice ask away 😊
I hope this helps but feel free to ask as many questions on here and also from your gynae. Even if a cause can’t be found many do still help women with their pain as they understand how frustrating it is for the woman.
Thank you so much for the comprehensive reply, Alaine1. That's actually really helpful to understand cyclical pain and it's connection (or lack thereof) to period/hormone cycle. I keep getting told the same phrase, every time they rule something out, that I 'should be grateful as that condition is awful to live with' but frankly so is this. My pain is also worsening, the last 2 months have had more frequent and longer periods of intense pain and I can't find any evidence that chronic pelvic pain worsens over time? Honestly the thought of just having to accept this pain is my life now and that I can't have sex with partner any more or go for a run without landing myself in agonising pain makes me want to take drastic action.
I can't just accept this pain is normal and that I have to live with it. What I'm doing now is not living, it's just existing , trying to work and taking meds.
Unfortunately there is a lot of evidence to suggest that all pain not just pelvic pain can actually worsen with time and isn’t necessarily caused by actual damage to surrounding tissue or organs. What is clear that even in conditions such as endometriosis even a tiny bit of rogue tissue can cause a lot of pain. One of the reasons for this is that the central nervous system remodels and starts over amplifying the pain signals so the brain receives these are worsening pain. In reality I think we also become ‘used’ to the pain being there and in many ways start to modify our behaviour which can in a lot of cases be counterproductive. The brain is great at looking for pain. After all I doubt many of us were bought up to wake up in the morning and think great I have no pain instead when we have pain most of the time and it’s gone or reduced in severity even for a few hours we tend to think ‘where is it, what happened’. We actively engage with it and go on a hunt to find it! Great detective skills but not great behaviour for our physical and mental health. I do think that a small part of your pain is related to adenomyosis but not all of it which is why I suggested the physio as the muscles in the pelvis can become overly tight. A good way to think of this is if you’ve gone to the gym after not exercising for months or years and wake up in extreme pain the next day. When we look at it that way we can instantly see it makes sense that the pelvis would behave in the same way.
That's really interesting. I think it's just so demoralising because when Doctors say "we can't find the cause for your pain" to a chronic sufferer, we just hear "you're making this up" which causes worse psychological damage and the cycle continues.
I do wonder if this is nerve damage or scar tissue, I've had 3 surgeries and one was for a twisted fallopian tube which cause damage to the tube even after rectifying the twisting.
Thank you so so much for taking the time to reply, it's very easy to feel alone with this kind of thing, plus research when it comes to womens health is so behind that it all becomes so confusing.
You need to do a pregnancy test . Just to rule it out as it sounds like labor Pains . Many women don’t know they are pregnant until it’s too late . Few give birth quickly & successfully like on “ I didn’t know I was pregnant “ many have awful pain & gyno problems for months & drs never thing to do a pregnancy test .
Thanks Doctorssuck5, my pain has been going on since June 2019 and they've done several tests throughout so pregnancy isn't the cause but I appreciate the message.
You could have pudental neuralgia and or pelvic floor dysfunction so it could be neurological or neuromuscular in which case seeing a pelvic floor physical therapist would help
Oh wow, looking at pudendal nuraligia and that actually ticks a lot of the boxes - they did say pain could be caused by my previous surgeries so maybe that's a good way to go. Thank you!
Look at the symptoms of pudendal nerve pain, or ask to see a pain consultant. Ask your correct consultant what evidence he has that the removal of your womb will remove the pain. Unfortunately women are frequently exposed to hysterectomies on the chance that this may help - but when it doesn’t where do you go then? A hysterectomy is not with out short and long-term risks
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