End of my patience really unsure what to do feel completely alone and like nobody is listening Consultant confusing me what is wrong with me

[LovelyLou81]

I posted once before about starting injections whilst I wait for my hysterectomy I am 42 and my periods have been an issue my whole life heavy/painful etc except for when I was pg/breastfeeding my 3 kids it was the best period free time of my life. Things got very bad after I did not go back on the pill following the birth of my 3rd as hubby got the snip so no need for contraception anymore. It never fully agreed with me always made me extra moody/sensitive gave me headaches and did not much to help the heaviness of the period anyway. I started to get awful lower backaches my gp put it down to my awful back to back Labour and epidural with my first I wasn’t convinced but ok and extreme tiredness and headaches but I did have 3 little ones so kept dismissing it but back pain got worse heaviness of periods extreme flooding through pads clothing bedding so embarrassing could barely go out the door that week. Finally at 35 I saw the gp who suggested the coil because I asked about ablation a friend’s sister had it and they said I was too young for it as it would grown back but if I got the coil at 35 it would take me to 40 period free or make them much lighter. Haf to be done at hospital as it wasn’t for contraception. Worst decision it was like the pill but worse heavy irregular bleeding no cycle felt sick nausea headaches mood swings kept going back and being told to let it settle but after 18 months I couldn’t take it anymore and basically sat crying in the gp surgery until she removed it. I was back to square one but at least the heavy bleeding part was now only once a month. 3 kids and working full time like this is so hard I went back again and tried and she referred me back to gynecology where ultrasound revealed a small fibroid and adenomyosis I saw a consultant in sept 21 who offered me a endometrial ablation or hysterectomy she took a biopsy then too which was negative. I was terrified of surgery having never had it and scared for the time off work and my children so chose ablation as a day patient unfortunately after 70 weeks on the waiting list my symptoms only got worse and now as well as the heavy bleeding my pain is actually worse than ever I am now having pain all the time not just during my period although sex makes it worse and causes more bleeding the top of my legs hurt my back pain is next level and is affecting my work. New Years Day 23 I couldn’t get up out of bed I soaked through sheets and my husband wanted to call an ambulance I made a gp appointment and I begged for help it was a new young girl who didn’t have a clue she asked me if I could have an std? Told me she couldn’t help as I had been referred to gynecology and was waiting for a procedure. After emails back and forth of someone I found online for my health board I finally got a telephone call from a new consultant she seemed lovely and listened to everything I told her she advised against ablation and was the first to mention endometriosis I said nobody has said that word to me before and scan didn’t show it she said it didn’t show up on scans. Asked about family history told her my mum had it and fertility issues had me and my brother through ivf then had full hysterectomy in her 40’s I remember helping her as a teenager. She slotted me in for the Monday morning to her clinic and I have never felt so relieved to see her in my life. She changed me from ablation waiting list to hysterectomy and I was thrilled but told me waiting time is 2 years for operation. Her solution was injection to stop my ovaries to ease the suffering for me whilst waiting but it could cause menopause so jabbed me and gave me hrt and sent me away. I felt awful I can’t describe how awful it was everything at once bleeding more than usual menopause symptoms I thought I was losing my mind and pain no better at all. Second month I was supposed to get 3 months dose but when I told her all my symptoms she said no 1 month and see you again and she was referring me for mri to see what was going on. 3rd month no better been bleeding way more than ever my period app telling me my cycle is every 9-12 days when I’m not bleeding I have thick brown stringy discharge and pain/cramps when bleeding is 10 on pain scale. I’m exhausted but been back to gp in between for bloods and apparently my iron is fine. She says she forgot to refer me for mri and says she will do it now and no point as fully expects to find endometriosis when she opens me up for hysterectomy. She scans me again with internal wand and says my lining is much thicker than she would like and decides to do a hysteroscopy there and then my god it hurt and I could barely tolerate the pain with no pain relief it was brutal so she stopped it quickly but said no polyps. She would see me again in 3 months take a 3 month dose this time. No improvement same scenario go to see her in June she is annoyed with me saying no need to see me gp could give me this injection I explained it was not working it was worse than the coil I had tried it for 6 months now and I was lucky to get 10 days without bleeding and I had heard nothing back from mri yet? She said no need for mri hadn’t referred me apparently not in her notes to give me one so she didn’t say it to me even though my husband was with me when she did. Then the worst part she doesn’t even think I have endometriosis and I should reconsider hysterectomy because this jag is the closest thing to one and if it’s not working for me and I don’t feel like a new woman with it then it’s not this that’s the issue and she doesn’t know what’s causing my pain my hysteroscopy is clear. I could have sobbed I said but with a hysterectomy I can’t bleed do heavy anymore and she said well yes there’s that. She called a nurse told her to give me another 3 months and sent me on my way. I have been so down ever since I feel sick I don’t know what is going on or what is wrong with me it feels like nobody is helping me or telling me what is wrong with me but I know none of this is normal and it’s taking it’s toll on my whole life my marriage my work my family and my health physically and mentally I just don’t know what to do or where to turn to for help or support. I don’t want there to be something wrong but I want a reason for all of this I feel like I’m going crazy. I honestly don’t want a surgery I’m terrified of it tbh but I know I can’t keep living (barely) like this either. What should I do?

[NeonPothos]

Hi, I’m so sorry you have been through all of that - you are in the right place!

I was also really really really terrified to have the laparoscopy and convinced myself that I was wasting everyone’s time, putting myself through an op for no reason, and must have been imagining all those pains for the past 9 years.

Although my pains have come back following my first lap in Feb this year, it was honestly the best decision I have ever made - to get that confirmation that I wasn’t going crazy and to actually be diagnosed with endo.

Even if you have the op and you don’t have endo, there might be something else they find, or you can even just rule endo out. It’s still a step in the right direction, because what you’re going through is not normal and don’t let anyone tell you otherwise

[Jen_dog]

I’m sorry you are having such an awful time.

I would be asking for a referral to another hospital and asking for it urgently. I would also consider going to A&E in any instance where you are bleeding through a super pad in less than half an hour.

Have you been given tranexamic acid to try for the bleeding? Or anything for pain relief? Have they also checked your cervix or even done a lap?

What injection are you having? Is it depo or prostap/zolodex?

Also in the meantime look at the endo-diet (anti-inflammatory diet).

I would also look to complain to PALS. Also check out the NICE guidelines for treatment for bleeding, and your NHS CCG pathway for guidelines.

[LovelyLou81 in reply to Jen_dog]

Hi thanks for both of your replies I am just terrified of having such a big surgery when I not the consultant seem to know exactly what it’s for if that makes sense? When I thought it was adenomyosis and a fibroid I thought that it would make sense to have a hysterectomy and that would be me finished and feeling so much better I couldn’t bleed and I would be pain free however if it is endometriosis would a hysterectomy help with the pain? I have never had or even been spoken to about a laparoscopy. My gp started with the pill ( a few different ones) then moved onto the coil and that’s when I tried the tranexamic acid which didn’t help much just bigger clots but still flooding through. Then ultrasound and internal scans that’s when the adenomyosis and fibroid was first mentioned. My gp said she had exhausted everything she could do and referred me to gynecology at Stobhill. That’s when I had another scan and a biopsy and she told me my options now as coil didn’t work was ablation or hysterectomy and I was terrified of the latter so went for day patient ablation not expecting a 70 week wait with my symptoms just getting worse. This consultant seemed so nice and helpful at first and listened to me and I believed everything she told me and was the first to mention endometriosis and ask about family history. It’s just since January every time I have seen her she says something different about me and I now feel like I am having surgery for something I have no idea if it is or not. She absolutely threw me last time saying she doesn’t think I should have it and I don’t even have endometriosis when it was her that said I did. I’m honestly so confused and worried I just want to know what’s wrong with me.

During all of this a few years ago I did go to A&E with pain that woke me up it was so sore and they queried cysts on ovaries and kidney stones but ultrasound was clear and they said it might have burst or I passed it hence the pain.

I take naproxen that was given to me by the gp for the lower back pain ( which was never mentioned could be related with my period issues) a couple of years ago as I’m allergic to ibuprofen and just in the last month the surgery gave me a prescription for strong cocodamol that I can only take before bed or if I’m not leaving the house as it makes me feel woozy and tired I can’t use them for work. I am on hrt gel and tablets after the injections decapeptyl were started but I still suffer from hot flushes and night sweats. Emotionally I’m all over the place too crying over nothing or really snappy over something insignificant I just do not feel like me at all.

I made a complaint about the wait time of the ablation and lack of communication but it was pointless I got a fob off letter blaming covid and told I could not respond I had to take it to the SPSO ombudsman if I wanted.

I have honestly tried everything the nhs has suggested to me to try and help these issues I don’t want to be unwell and would try anything to help myself for my family but nothing has worked and I still don’t know what’s even wrong?

[Pennyheart1]

I am so so sorry you have gone through so much and still are.

You’re not alone. It took 7 years for me to be believed that my periods were abnormal…so I know how it feels to not be heard or dismissed or for someone to try to put a quick plaster on my problems.

I’m definitely not an expert in all of this. From reading your post and the comments on your consultant - are you able to ask for a different consultant? Or try another hospital?? It feels that you are not getting clear answers or consistency from her?

If it was me - I’d want to understand why I had my symptoms before choosing hysterectomy. I had a uterine ablation done 4 months ago, (endo cyst, fibroids, possible adeno) and my bleeding has become less, less clots, but still heavy enough, which I’ve conceded is fibroids etc. Am also now wondering about hysterectomy in future as I’m sick of my life being scheduled around my periods and having to deal with all that comes with. But there has been an improvement - just is it enough..? So totally understand why you are thinking about it! My consultant said we could do ablation and see what happens… hysterectomy still being an option down the road.

You know your body and when something is not right. You need to find a go and consultant who will listen, work to help you and help you understand what’s going on. Maybe go back to your gp and explain - they can be good at following things up and chasing answers.

Hoping and praying that you get the answers and help you need soon! Sending you all my best wishes x

[Luc81]

I'm so sorry about your experience, I think what u need is endometriosis, adenomyosis especialist who will know exactly how to help you. There are not many unfortunately. Ablation can make things worse, talking from my experience. Also hysterectomy doesn't promise that u will be pain free always . That's why u need especialist experienced with this kinda problems, he will go in and see what's the problem is and deal with it. Even if u go private is so worth it. But it need to be endo especialist. Your case sound extreme. Trust me i have been there, 7 years of misery 3 operations, first 2 were pointless and made me feel worse (Ablation in uk btw) last year I had operation with top guy in Prague. I had to research my self. I had adenomyosis, endometriosis, fibriod. He did the operation excision and even saved my uterus. It was tough recovery but God was worth it.

Try to look on website icarebetter , full of endometriosis especialist. First thing u need a doctor who u can trust and who will know how to help u.

I know u suffer but trust me with the right people things can get better.

Endometriosis is complex disease, its a lifestyle change. Diet is important, supliments, balancing hormones, controlling stress, u really need to look after yoursel physically and mentally. Let me know if u want to chat. Good luck 👍

Ps . I can't believe the girl asked you if u have std, I mean that says everything. The knowledge about endometriosis and adenomyosis is so little. It's ridiculous. It needs to change .

[moonghost]

This sounds so terrible, I’m sorry that you haven’t been taken seriously. My heart goes out to you. I would ask if you can be referred to the pain team - I saw a pain specialist who advised me to up my dose of duloxetine (known as Cymbalta) to 60mg (I took it for depression and anxiety prior to endo diagnosis) because it could help control my moods and helps with neuropathic pain. That was very helpful for me, really reduced general misery and pain as hormones and BC don’t agree with me. I was also prescribed Voltarol suppositories which keep pain at bay for about 12 hours.

Good luck, I hope things improve for you soon.

[BloomingMarvellous]

Am so sorry you are going through all of this and all the confusion surrounding it.

Whilst am not a consultant etc clearly things are remiss . From your description it very much sounds like adenomyosis. This can come in multiple forms including thinly spread in a very diffuse way as well as large lumps and bumps. They don’t know an awful lot about it but it is understood to be endometriosis related. Not everyone with endo gets adenomyosis and not everyone with adenomyosis has endometriosis but they often both occur. It’s extremely hard to manage and can cause enormous levels of pain, bloating, constipation and excessive bleeding. Feeling as if your pelvic floor is about to fall out of your fanny is another joy. Have got the badge on these.

It’s frequently missed, rarely considered and often mishandled. There are few treatments on offer and it’s oft said that hysterectomy is the only solution. New Zealand treat it very differently including looking at inflammation causes and infections but not in the UK. In my experience it doesn’t improve post menopause. During the menopause/ perimenopause it’s hell.

The second thing that might apply to you - as well - is progesterone intolerance and/or resistance. Your history certainly raises the question. Two different problems that can make you feel like shit and may well be part of why you can’t handle the treatments on offer. A coil will release small amounts of progestin direct and that can be hellish for someone with intolerance or resistance. Some women don’t handle progestins ( synthetic version) well but are better suited to body identical versions like Utagestan ( not suitable if you have peanut issues ) . Other women do better using the synthetic progestin diogest, which works on a different pathway. If you’ve not tried these It might be worth a shot while you’re waiting for other care.

It seems that recent studies of miRNA signalling indicates problems with both progesterone receptor resistance and use in women with endometriosis and adenomyosis. These women seem to process progesterones differently with it causing inflammation which kicks off the lesions of both endo and adenomyosis rather than soothing as it does in most women. Some of us opt for a hysterectomy because of this because they can’t tolerate or benefit from progesterone suppression. I’ve always found progestins a no go causing a range of issues from migraines, huge weight gain , loose joints (!) and suicidal depression but can just about handle body identical at a very low dose. It’s not ideal but I get what’s happening and that’s helpful at least .

I can’t make choices for you, but hope with a bit of clarity making an informed choice becomes easier. Let the consultant know that this has all become unsatisfactory and unmanageable with poor and confused information. In your shoes I’d get on the hysterectomy list fast and ask for an urgent referral. You’ll have time then to do the thinking and process whilst not putting off some measure of resolution in the interim. If your consultant won’t then ask ( after finding out your local specialists) for a second opinion.

All the love

[BloomingMarvellous]

meanwhile go here @heal-endo on Instagram. Katie Edmonds - she’s also written a fab book Heal Endo with a companion 4 week recipe plan for anti-inflammatory diet. It’s helped me no end and also doing core pelvic work @corerecoverypt is brilliant. She explains why standard core work and kegel type exercises can often cause more problems with endo and Adenomyosis. Worth doing pre any surgery or as stand alone. Xxx

[Marcia71]

it sounds like you have adenomyosis which is where endo affects the actual muscle of the uterus. I think a hysterectomy would be a good option but if there is endo there it needs to be removed at the same time.

The Gynae isn’t well informed as the injections don’t work for everyone. Also they won’t help severe endo and unlikely to help adeno as they switch the ovaries off. So quite different if you’re awaiting a hysterectomy without ovaries being removed 🤔.

I hope you are still on the wait list for surgery and hope you get some relief soon.

Search this group for posts by Lindle as I’m sure she’s spoken about the injections before and she’s really knowledgeable on all things endo.

[Coral07]

hi I’m so sorry your going through this I’ve been through the exact same thing since I was 11 to 21 and I was so I’ll I couldn’t stand and not 1 doctor would take me seriously, so I went through the complaint services for the NHS who faught my side and got me in with a surgeon and got me surgery which then diagnosed me with stage 3 endometriosis EVEN after ever doctor in Liverpool said I didn’t I couldn’t belive it!! Best advice my mum ever gave me and I give to other people is YOU know your body better than anyone else no matter how professional they are if you know there is something wrong even though they all say there isn’t then you fight and keep fighting untill you get the answers you deserve🥺🥺🫶🏼I still have doctors now try and gaslight me even though I’m diagnosed and had multiple surgery’s!!

[Poppyg16]

My heart goes out to you as I have been on this journey for most of my life. I’m now 56 but when I kept coming up against gynaecologists who would not listen and fobbed me off in my 30’s I researched on the internet and found out about the specialist endo centres in the uk and how they are run by a multi disciplinary team that work together. I found that one consultant who worked at a centre near to me and had very good online reviews also did some private work. I know we shouldn’t have to pay but I put the fee on my card and it was some of the best money I have ever spent.

The consultation was over an hour long and I was listened to for the first time. The consultant also was very angry at the treatment I had sofar that resulted in going down the private route and referred me to his nhs endo specialist centre where he said they had all the most up to date resources and a whole team of consultants who worked together on such cases as mine.

I have now been with the centre for all my endo treatment for about 8 years, have an understanding female consultant and feel safe with them. Specialist endo centres are highly regulated by the nhs and have high standards that are constantly reviewed.

I do have to travel quite a distance to the centre but many of my consultations have been on the phone when there is no need for me to physically be in the room like getting scan results. I am now awaiting hysterectomy with bowel resection and although terrified at last have found doctors who I have faith in. I’ve had multiple surgery’s and although it is normal to be scared I always find the bit I was most scared of has no effect on me as I’m asleep, there is no memory of it and coming round from and op can actually be a more positive experience as you get a strong sense of relief that it’s over. Also they give you some very relaxing meds!

Hope things soon improve for you. If you can take back some control how I did it will make you feel a bit more empowered and in charge of life again. Everyone is entitled to another opinion and to choose where they have treatment.

I think it is amazing how you manage a job and family being so poorly, it must be so draining. Hang in there, you are very strong to be coping with all of this, you know your body the best. I hope you have a diagnosis soon and be kind to yourself, I know it must be hard for you just now and that you feel alone but there are lots of us out here, we just don’t usually get out as often as others 😀

Always remember it can get better.

Kind regards. Poppy