Avourneen in reply to TogetherWeAreStrong1 month ago

That is so true. I really feel consultants should be much more upfront about what an operation can and can't do. There still seem to be a lot of surgeons 9and some "endo activists') promising that one excision op to remove endo, or a hysterectomy can magically cure endo. I know a couple of people who have had great success stories and it has never come back but only a couple. It seems to be like a very difficult weed that just keeps coming back. We really need doctors to spot it earlier and researchers to find some more effective treatment and surgeons to be realistic about the prospects.

TogetherWeAreStrongModerator in reply to Avourneen1 month ago

That boggles my head to Avourneen ! I too have suffered from sever insomnia, I have only recently accepted that endo has contributed to my depression and anxiety, as I've always felt it's something I should tell other people, as it will affect my position in the workplace, so I didn't, but that didn't stop the episodes, the day I was led to an ambulance at work, post surgery is etched in my brain. Since the first COVID lockdown I started to watch/listen to Calm on Netflix (other providers are available) and I found this really useful in calming down my thoughts, which led to my body relaxing. I rarely get it now, but my sleep is still always broken 🙃

My_Username in reply to Avourneen1 month ago

I agree, it does seem odd, but it's standard practice to offer add back HRT following oophorectomy.

"Current guidelines state all women <45 years old undergoing surgical menopause should be offered HRT until age 51, unless there are contraindications to treatment such as a personal history of hormone dependant cancer" (British Menopause Society, Surgical Menopause: a toolkit for healthcare professionals)

I suspect the HRT doesn't bring the levels back to pre-menopausal levels, but is enough to reduce symptoms.

I couldn't cope with the HRT available at the time of my surgery, so I went without it for about 6 years. Apart from immediate insomnia, I didn't have too many problems and even the insomnia wasn't that bad after a few years.

However, years of hormone deficiency caused serious long term hormone related health problems to start appearing (eg Burning Mouth Syndrome), so I decided to try HRT again as new products had since become available. Unfortunately, rather than improve matters, Utrogestan made things worse.

What I'm doing right now is seeing a private Gynae, who knows about endo and HRT, and working out what's right for me. I'm trying out an alternative progestin to Utrogestan. If that doesn't work, I've been told it's OK for me to just have oestrogen and testosterone (there's evidence that deep infiltrating endometriosis is progesterone resistant anyway)

Avourneen in reply to My_Username1 month ago

That's good it's quite hard to find a specialist who knows about endo and HRT. There are lots of GPs etc doing courses of just a few days and declaring themselves HRT experts, you do have to be careful with it when you have had endo.

I have heard that about DIE which is a bit worrying as I'm on a high dose of progesterone but it does at least stop me bleeding. It's incredible the amount of different effects hormones have on so many things, a very very comples area that I think we are only just starting to understand. I'd like to know more about your specialist if you can DM me. I would like to get my hormones checked out at leats and preferably find a lower risk progesterone.

It sounds like you have been through a terrible time, I hope your specialist is able to help with the insomnia and the burning mouth thing that does sound awful. Post an up date and let us all know how you get on, good luck. xx

Reply (0)Report

CryBaby91 in reply to Journeytowellness431 month ago

Oh chick, PMDD is awful, I totally understand your reasoning with the suicidal thoughts and stuff. When I was on the GnRH treatment the mental side effects were crippling, it was honestly one of the worst periods of depression ive had in a long long time...and only a few months prior I had to be cross examined in court (as a victim), I was genuinely more mentally strong during all that lol. Hormones play a huge role in mental health, have you spoken with anyone at all? I find mindfulness super helpful, but we are all different and find different things helpful.

I really don't blame you for not trusting them! Do you know if your consultant is a specialist? Because obviously the expertise of the consultant can be a huge factor in how helpful their surgery is. Happy to private message if you need to chat this all through, I'm wanting to advocate for more of us to get better care so helping as much as poss xxx

CryBaby91 in reply to TogetherWeAreStrong1 month ago

Thank you It has been the same for me, finding them has been an absolute godsend. I felt so angry and abandoned after my consultant dropped me, they really stepped in and picked me up. Thank you for clarifying my information was correct too much appreciated! X

CryBaby91 in reply to Avourneen1 month ago

I actually completely agree with you, and wish that actual gynaes would be as upfront and honest about all this! My recommendation was to be very careful and do lots of research before making any decisions, and to seek out the advice of a proper endometriosis specialist before looking at something as severe as hysterectomy.

I wanted to make sure that it's understood that hysterectomy is not a cure, that was my main aim here. The fact that many patients have had recurrence of endometriosis after their hysterectomy, or indeed after natural menopause, illustrates this risk. Too many doctors are eager in saying let's pull out her womb and ovaries and that will fix it, then lots have pain again after and doctors abandon them because "they can't have endo anymore", I've spoken to these women on this very group. That is my worry, that people believe it will be some guarantee that will end all their problems. Admittedly saying "nothing" may have been a poor choice, I'll rephrase. I should maybe have said "removing the womb may not have the effect they hope for" because lets be honest here, even for example 1 in 10 women saying it didnt help is enough to say we need to be sure before doing a major and irreversible operation (not a real statistic, just to illustrate my point).

I do agree that it helps some people, I did highlight that in my op and said that in most cases it's helpful for the sister condition. I also agree that when the patient is over 40 the menopause is more likely so all that decreases any unwanted early menopause side effect. But there's real risk of bone thinning, very very well documented in menopause. Which was something I pondered on when hysterectomy was thrown around for me at 30, could I be risking having osteoarthritis at 50, swapping one issue for another. These are all things I weighed up because I knew the pros and cons, which I ALWAYS encourage others to do. I would never ever encourage anyone to do one thing or another, I only wanted to be sure that the poster knew to research fully, ask her gynae, seek a second opinion from a specialist (if possible) and make a full informed choice. I apologise if my wording made it seem like I was bashing hysterectomy, that's not the case. I was only bashing the doctors who think it is something they can just do and it will be a cure, and the false hope they can hand out in the process. We all know this condition is very evasive and does whatever it wants lol so being prepared for the pros and cons has to be a positive right? If you read a later comment I made I said with more information I understood her reasoning for considering a hysterectomy, so definitely was not trying to bash it at all.

Thanks for the papers! I shall have a read now I'm incredibly interested in any new research. I can only comment on the experience I've had with NN, and honestly it's been amazing. Especially after my BSGE gynae left me out in the cold. No service gets things 100% right, but the recommendations I've had have been solid and more than NN have suggested them, one person on here did too. I think it's always best to gather information from multiple sources, check it yourself and make your own decisions. Going to uni helps me do that, but lots of people can't always do the same, so groups like NN are a life line to those people who may otherwise be left totally alone...because honestly, how many of us have doctors who are genuinely advocating for us and supporting us?I imagine not many Xxx

Avourneen in reply to CryBaby911 month ago

The other big risk that is very rarely mentioned with a hysterectomy at an early age is an increase in the chance of getting dementia, oestrogen apparently protects the brain to an extent. There are some quite startling studies on that but it is very rarely mentioned as a risk.

I appreciate your points because having a hysterectomy really does have risks and some doctors do really believe that it will totally cure it and I have heard of lots of women being told they can't have endo because they have had a hysterectomy but then for others if they have a hysterectomy when things aren't too bad it can really help. Both my sister and I have endo she had an early hysterectomy at 35 and found the early menopause terible but had no HRT but now she is in great form and it has never come back whereas I didn't I was given different advice didn't have one and now have terrible endo , a frozen pelvis and endo into my diaphragm.

I think it is quite different for everyone but yes ,you are totally right the thing to do is find a good specialist and see three or four specialists if you can. to see what their different opinions are.

It's very very hard to find a good specialist because they just all advertise themselves as brilliant whether they are or not. I chose a surgeon from Nancy's Nook who has since "retired" before being investigated for some very serious medical misconduct. There is a facebook group of about 50 women who had very very bad outcomes after his surgery. I think Lindle's facebook group is the only place you can find honest patient feedback. The same names come up as good or bad over and over again.

Ask everyone everything though is a good idea. I went into my first op totally blind and had completely useless ablation and was back in agony within 18 months.

There should be some recording of patient's feedback made public not just selected glowing testimonials. You are right too that the number of doctors who believe complete myths about endo is shocking, when gynaecologists don't know anything about the illness it is so disheartening. The thing that I don't get above all is why don't doctors listen to their patients? Telling people they can't be in pain when they clearly are or that it's all in their head just drives patients to despair. We deserve better... i think we are singing from the same hymn sheet really but looking at things from our own very different experiences. So maybe from different sides but thanks for the very civlised discussion. xxx

Reply (3)Report

CryBaby91 in reply to Avourneen1 month ago

Do you know what I've loved about this though? Disagreeing doesn't mean you have to be disagreeable! We've just had a really good discussion and actually both completely agree! I was on edge yesterday anyway after being jumped on a bit lol so honestly thank you for just being cool and having a discussion even if we disagree on some very very minor points....which actually I don't think we even actually disagree on lol it just appeared that way from my op!

Gosh love, I am so sorry! I really really really understand. I also had bloody ablation, and my consultant was BSGE recommended, found him through using this group and honestly all the signs were good at first. He never ever mentioned ablation once, even sat in my hospital room waiting for my turn to go down he said excision, and my discharge leaflets said excision. It wasn't until around 8 weeks later that I received the letter from him where he explained he ablated everything. And decided to recommend to my GP that I come off all my painkillers because my pain should have completely gone! Even though a sentence before he talked about how it isn't a cure and I may still have pain. It was so so confusing and I was so angry. But my pain was down from a 9 to like 3/4 and well controlled with painkillers, had a kind of life back. But bam, 5 months later it was back with a vengeance, by month 6 my stick was back in use and all the pain had returned. He totally gaslit me and said it couldn't be endo and kicked me to pain clinic and off his books. I was so devastated. So i really do understand how you feel, I'm so angry that he's done this because almost a year later and all my symptoms are even worse now and I have no gynae anymore, I have pain down both sides now and have had to start using crutches! I wish he had just left it if he wasn't going to do what he told me, I only went there because I knew he did excision.

Yeah the dementia thing was one I had come across on an endometriosis webinar, but it was an Australian one or American so I didn't have any reliable evidence for it and didn't want to risk freaking anyone out if no one else had come across it before lol or worse, having to claw around the internet finding reliable evidence to post haha I'm 2 days late and my belly is killing, so I'm sure you can imagine I was like "I'll just not mention that one atm!" Ironically I found out about that whilst on GnRH treatment, which the gynae told me to research MYSELF and decide. Ridiculous really! All the worst long term side effects were not in the leaflet. It was honestly appalling. So when I found out the severe impacts we can suffer long term I was like sugar!!

Incidentally, my neighbour had to have a hysterectomy in her early 30s due to some gynae issue (not endo, though her sister has it). Shes in her early 50s now and her hip has degenerated so bad she needs a stick and a hip replacement. I was like woah, I could be swapping endo for a life of arthritis. Gosh, what a choice! My husbands boss also put me in touch with his wife, who had severe endo which strangled her bowel. She recommended the guy I went to see too, and she had a hysterectomy and found complete relief from it. I think I've spoken to around 3 women who have found relief, which is great! But I've also spoken to around 10/15 women who haven't, and have had such a huge operation and now feel like they have extra issues on top. So it definitely worries me that some may run into it head on thinking it works, and then be left in a bad situation. Don't get me wrong I may consider it myself in the future, but I want to be over 40 to mitigate the risk as much as poss. You know what I mean?

I think we both definitely agree that we all have to be super careful before making any life changing choices. Which is so so unfair, we should be able to walk into a gynaes office and know they will do the best for us. Why we don't have a speciality of our own I don't know! Endo should be treated way more seriously, it's often just mentioned for a small section of a gynaes training, and they have to choose to become specialists...which most dont. We all get thrown in with general gynaes, who usually deal with basic problems not severe pain issues. There's the heartache of sitting in appointment waiting rooms with pregnant women too, which really shohldnt happen. Endo consultants should be just that, I don't want to search through every gynaes CV to find out what kind of gynae he is and what reviews he has, we should just know we've got an endo consultant! There's also the added confusion with BSGE not meaning specialist, because they can just specialise in pelvic surgery and be BSGE. My hospital even called itself a specialist hospital, then went and did ablation and tried telling me that now it must be in my head because I've had surgery! The care we all get is shocking, and I do worry that some of us have docs who just go "lets do a hysterectomy" because their crappy ablation failed or even their excision skills failed. As we both know, excision can fail, but these docs won't see it. I told mine I don't blame him, and he still gaslit me and said to see a spine specialist for my back pain and get mental health help! So now I do blame him lol, not for my endo returning (well...not 100%)...but for how he treated me, and I'm going to spend my time making sure I arm everyone I can with as much info as poss now, to try prevent more of us having the same. If it's the last thing I do I'm going to speak to as many mps as possible and push hard for us all to recieve a better basic standard of care, where every one of us has access to a specialist and the condition is treated properly, as a complex chronic condition which isn't simple to treat right now. Because the more people who are told that surgery will definitely work, or hormones will definitely work, or anything else in their snake oil bag...the more we all feel ignored, abandoned and left in pain with our endo sticking to more organs and causing more havoc as it's left to run amok.

Sorry for the mega essay AGAIN lol! If you want we could follow each other and swap info if we find anything? Like new research and stuff? Xx

Reply (1)Report

TogetherWeAreStrongModerator in reply to Felma1 month ago

Hi Felma thank you for your contribution to the post. I have provided a link below which takes you to our Endo website, it's full of really good info about our condition:

endometriosis-uk.org/sites/...

Endometrium is the inner lining, but endometriosis cells are located outside the womb. Although there's still known cure, current research does support that endometriosis lesions can produce their own oestrogen. I was really suprised to learn this myself and only found it out as a result of nancysnookendo.com/.

One of my favourite things about being a moderator is everything I learn. I have only ever had 2 people to talk to about my endo and that's my Mum (she had it to) and my consultant. My conversations with my Mum was about our shared pain stories and with my consultants they were to high level. But this forum and endometriosis-uk.org/, have changed all of that and I finally feel a little more 'in control' of this uncontrolable condition.

CryBaby91 in reply to CryBaby911 month ago

Endometrium and the uterine lining are different things, people get them confused, including gynaes. If it didn't have the ability to produce its own oestrogen how would women post hysterectomy have fresh endo growth? How would endo grow in places outside of the uterus? The old theories of it being tissue from the uterus have been debunked I'm afraid.

My_Username in reply to CryBaby911 month ago

I agree - it's well known that endometriosis produces it's own oestrogen and has several differences to normal endometrial tissue (eg progesterone resistance, oestrogen receptors > 100x that in normal endometrium,...)

What I'm not clear on is whether or not circulating oestrogen levels can also affect re-growth. I've spent hours on PubMed trying to find answers, but haven't found a definite answer yet.

Reply (2)Report

CryBaby91 in reply to My_Username1 month ago

I believe it can, if I understand what you are saying correctly lol I'm on 5 kinds of painkillers today so I'm a wee bit woosy! But if you mean for example when we have a rush of hormones? Then yes I believe it does. Xx

Reply (0)Report