Not quite sure how to begin. Have been reading like crazy across forums and also on pubmed, but info/studies are frequently contradictory, controversial and/or limited. I am so confused. I am going to insert my history here, but please feel free to skip ahead to the question. I am not sure how best to proceed and feel kinda bad to start off with a post as long as a novel! But I find it helpful to read about other people's full experiences...so I'm going to share the whole shebang.
BACKGROUND: Please skip to Question is this is superfluous!!!!
So, I am 44 with issues from teenage years - pain at menstruation, extremely heavy bleeding (through clothes, onto furniture, thought this was just a woman's lot). Awful burning bladder issues & inability to hold on to urine. Frequenlty wet myself (memorably once in the aisle of WH Smith on the mile walk home from school one day.) Have always had a dull sick 'gravity' pain if standing still - for 30 years. I can move or sit, but not stand or I go too weak to stand, sometime collapse. By my late twenties I was going through oddweeks of peeing big clots of blood with intense pain, followed by a year of diarrhea so bad I had to plot my path through the day by access to toilets. Then by some random miracle I opted for a 1st generation IUD for contraception and boom - life was suddenly soooo much better. No periods, and over time everything faded away except for the weakness on standing issue.
At 40 I had IUD removed. First year was pretty good. Then the pain started at ovulation with bleeding/spotting through entire luteal phase. Pain after sex too. Pain progressed until I was lucky to get a few days a month pain free. Ovulation bought flu like symptoms, suicidal thoughts and 2 days after ovulation monthly attacks of cripplingly painful diarrhea, plus a flare up of lower back pain. As I had strained my back the year previously I put this off as a post-recovery complication. But over 2 years later I still get back pain, numbness and pins and needles in my feet, pain in my hip and pins and needle in my mid back/chest. This is cyclic and flares up in the luteal phase.
I have had general gynea exam, vaginal ultrasound, endoscopy with biopsy (due to possible thickening of uterus lining seen in the Ultrasound). There was some talk of a very small, insignficicant fibrioid at ultrasound but nothing of concern, and clinically non-significant cysts on my cervix. So given all clear. 1 year ago I had the Mirena replaced and it helped, but not like when I was 30. Pain is still present, though I get the odd few weeks of respite I still get irregular spotting. Constipation issues can be crazy - one moneth I had to double up to 2 suppositries at once + dulcolax tabs all at the same time to get things moving, but no visible blood or pain on motions.
Questions - I have a follow up due at a provisional BSGE centre (Taunton), where I saw a registra, and want to make the most of it.
Lap diagnostics? I'm scared the disgnostic lap will not be thorough or only look for classic dark gunshot endo. They have strongly recommend a diagnostic Lap but I dont think I can psycholigically cope with nothing being found. I have been referred to pain clinic with instructions to phone recptionist for Lap if I change my mind. My question is...are there any other tests I can request to help guide me, or give extra confirmation that lap might find endo? CA-125 Blood tests?
Anyone know of a PMDD/Endo link? The registrar told me that the mood swings at ovulation are not linked to endometriosis. Does anyone know if suicidal thoughts at ovulation can directly an endo issue, rather than a separate PMDD condition (I am getting treatment for that btw - sertraline)? It *feels* connected to me. ALL the cyclic sympoms fall in place like clockwork, even though the IUD had supressed menstruation proper. And it all started at the same time.
Thanks for bearing with me - I feel all I do is witter on about invisible health issues these days :- ( I;m not sure my family think it is real.
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deafhound
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I’m similar in that I don’t want a lap, my first gynaecologist was horrible and so I went back to my doctor. my new gynaecologist has referred me for an internal ultrasound she said it should pick up on any endo if it’s more than 1% or something like that. She also said most people have endo and don’t even know but told me she wouldn’t consider lap unless I was having fertility problems as she wouldn’t want to put me through surgery for nothing x
Thanks for replying - it is nice to know I am not alone.
I'm sorry to here how you were dismissed, My own gp and general gyane were helpful, but I guess I got my hope up a bit too much about seeing the regrisrar at the BSGE. I do sympathise about seeing a horrible consultant - I once saw a neurologist that I swear was still drunk from the new years, refused to look at my pain diary and could offer any solution to the fact hat the Brain Scan he had for me a) had no images and b) made no mention of 2 frontal lobe damages from a previous head inury. He ummed and ahed and got let his secretary come in and tell heim he had an urgent appointment for another patient. My consustation lasted 5 minutes and I had been housebound with chronic migraines/photphobia and partial paraylis issues for 3 months. It devasted me at the time, but I have taken strength. There are some amazing consultants out there and some apallig ones - sometimes we have to take tactfully state or concerns and seek second opinions.
Ultrasounds are done to *rule out other issues* not to diagnose endo ( although in a minority of cases certain features of endo *may* be seen). what you were told is simply not true or supported by evidence. It takes specialists years of trang to spot endo lesions in surgery as the cell changes can be hard to spot....and sometimes it is the smallest of spots - they can be flat and clear - can cause great pain and inflammation.
It is true that a risk of sugery is that nothing is found - which is why the skill of the surgeon is so vital. Can they truly see all the tissue changes? Will they look in every nook and cranny or consider involvement of deep, hard to access pelvic nerves? This is what is holding me back. How do i find the trust?
Endo is not guaranteed to cause infertility, and the fact that you were told that inerftility is the primary concern is just not right. Progressive pain, inflammation and all the other symptoms of endo are life-changing, and are symptoms enough to warrant treatment and diagnosis. My advice would be - if you pain is preventing you from living your life - seek a second opinion. Find a gynae more knowledgable in the disease, or at least a gyane willing to investigate and learn from your expreriences and input.
Hi there. I thought I'd share my experience as I'm someone who had a lap where it was missed but many years later got diagnosed with deep endometriosis. I didn't really know about endo when I had my first lap 10 years ago. It wasn't mentioned. A simple cyst had showed on an ultrasound but I knew I was in pain, suffering awful periods and extream bouts of diarrhea. I was told nothing was wrong other than IBS. It was disheartening. I told myself I had to get on with it and struggled for years by myself. Things got progressively worse in mid 2017 till I was in a+e every few months. Nothing helped the pain it was every day. I consulted a private gynaecologist with experience working at a BSGE centre (private because I'd moved outside the UK so can't use the NHS anymore). He really listened and suggested I'd benefit from a lap. It wasn't an easy decision to make and I was scared, but also scared of my symptoms. He found deep endometriosis in my uterosacral ligament. Finally a diagnosis at 37! He believes it was there all along but said it starts off microscopic so can be missed at a very young age and said that general gynaecologists can miss it due to its different apperences. I'm sure the first lap didn't look very far
I'd say you have a few things going for you. You said it was a BSGE centre you are being seen in so that indicates a higher level of experience of the disease and that's the kind of person you need doing your lap. Also your age and worsening symptoms would indicate progression of the disease so it should probably be easier to spot.
Nothing showed on external ultrasounds or a CT scan prior to my lap. I understand an internal ultrasound if done by an experienced person can show deep disease as can an MRI with contrast. So possibly you could ask for one of those first if you are really concerned about procedding with the surgery but if they don't show anything it's not a guarantee it's not there.
I hope some of that waffle above helps. Honestly there was such a great feeling of relief to wake up and find they found something, it made it so worth while. For me it was better to know
Thank you Its not waffle at all. The relief of being here, being able to share is enormormous. The thing is on good days I always think that I can turn into some kind of superwoman overnight and be done with all this medical stuff, and the idea of a lap seems like something a hypochondriac would do. Truth is the idea of them finding nothing scares the hell out of me, because I am scared no doc will ever listen to me again and it will go down on my record as some kind of anxiety/psych issue. On bad days i would cut my left arm off to be free of this and move on with my life.
You are right that I am extremely lucky to already be at a Provisional BSGE centre, and given my worsening symptoms and my own feelings of my body/self it all seems to fit. Plus my mother and aunt had endo sympomsm with my mum having a mess of adhesions found when she had her tubes tied.
More than anything I want to know. The knowing - to me - would be half the battle. I would feel.....vindicated, I guess. But i'm terrified of nothing being found....of 'being found wrong'......
I get those feelings. I did that mind over matter British thing of : ' I can power through this! If I ignore my symptoms they will go away' on days when things weren't do bad. I was scared of what they'd find and scared they'd find nothing. Plus I also had to self fund my eventual surgery as I'm no longer a uk resident which was added stress on what it would show! Generally doctors don't offer laps for no reason. A BSGE doc doing it should mean they treat it at the same time so you won't be going through multiple opps. Honestly I dragged the oxygen mask off my face in recovery to ask 'did they find something?' and remember sitting in my bed pinching myself thinking 'they found something! They found something!' afterwards with this huge feeling of justification and relief. I really hope you get that feeling soon to! X
Yes that is it exactly.....but what a state of affairs it is when we are happy to be diagnosed with a god-awful disease noone knows anything about, haha. I'm glad your lap went well! Best of luck xx
Peeing blood clots, diarrhea, dull pains, heavy and extremely painful periods are huge ref flags. How your doctor at the time didn't send you to get further testing for peeing blood (!!!!!!!) is beyond me. Inserting an IUD without further examination was already extremely superficial.
Anyway fast forward to know. It sounds like you've been suffering from endometriosis for +20 years and your endometriosis is severe if you were peeing blood clots and had diarrhea 20 years ago already. The changes of them finding advanced endometriosis are extremely high.
For this reason, I need to tell you that a diagnostic laparoscopy will not be enough (if you have endometriosis, but highly likely). You will need to undergo through excision surgery with a team of surgeons (considering bowel and bladder involvement in your case are highly likely), so I suggest you ask your surgeon at the BSGE centre what will happen during the diagnostic laparoscopy in case endometriosis is found (will it be all removed? Will it be removed via excision or ablation surgery?). These are fundamental questions to understand what dynamics you'll undergo.
The CA125 is not a reliable endometriosis diagnostic marker. PERIOD. Countless women with advanced endometriosis get a negative CA125 test so it's not an accurate test to determine if you have it or at what stage that might be.
Suicidal thoughts during ovulation can be due to severe hormonal and biochemical imbalances so I suggest you look into that (get a full hormonal panel/blood test, get help from a nutritionist, a naturopathic doctor and/or functional medicine doctor who specialise in endometriosis).
P.S.: I don't know how skilled the gyn who performed the ultrasound was, but fibroids in your uterus, cysts on the cervix and a thickening of the lining could be indicators of something else major going on. I suggest you point all of this out to your endometriosis specialist.
Thank you Its funny, your first sentence and i'm like 'huh yeah that's not really normal is it' But to me ....its kind of my normal you know? So whilst you prob didn't intend it, that made me laugh. Thanks.
A lot of the attacks of peeing blood clots happened when I was abroad (rural developing country). My survival hack was cutting the top off a water bottle and keeping it next to my bed! When I got back to the UK my parents kindly paid for a kidney ultrasound privately. It was fine and I/we thought no more about it. I was not registered with a GP. A couple of years later I ended up in an London A&E after nearly passing out/peeing blood but was told it was a simple urinary infection. No tests to confirm, but it did go away with antibiotics! I cant recall ever mentioning the issue to a GP. Maybe I should, even if it was unrelated to current issues. It has been on my mind, for sure. But I also don't want to bundle up all my life's health events into one - By that I mean that I don't want to come across as a neurotic patient with an endo-conspiracy theory :-D.
The mirena - that was for contraception. Had previously tried a copper coil but bled bad (15ml an hour for hours at a time - I know cos I used a menstrual cup- was abroad again so never saw a doc). Anyhow that coil got dislodged so on return I was offered the mirena - new technology at the time. I never saw a gynae, just a specialist nurse at an NHS clinic in London.
I was gobsmacked that so many issues started fading from that point on. My GP practice didn't handle sexual health matters (This was London in early 2000's - it was a miracle I got an appointment at a clinic at all), so no follow up with a GP.
Thanks for the input on the CA125. I find that helpful. I am thinking I should be prioritising questions about how a diagnostic lap would be handled, and -as you say - what they do during/after. I do know they have separate specialists for bowel and bladder endo, if found. But I got the impression the diagnostic lap is not an endo specialist, and that really bothers me.
My NHS team won't do a hormone panel on me because it is considered unreliable in perimenopause. Still, wanting to self manage, when the mid cycle bleeding/pain/mood issues started I had a private blood panel done, and the levels were all mid range.
I am now taking sertraline (zoloft) which helps enormously with how my body/brain handle hormone fluctuations in the luteal phase, so the extreme moods have lessened.
After the transvaginal ultrasound I did have a biopsy of the endometrium because of the thickening and that was ok. Smear tests standard swab tests and whatnot are all fine. All things to be grateful for
Thanks again for taking the time and best wishes to you.
Well, if you got a kidney ultrasound and got treated with antibiotics, clearly you handled it well. You were the patient and not the doctor so clearly you thought they considered everything and didn't really feel like insisting! I don't blame you.
The NHS might not want to offer a whole hormonal panel, but a functional medicine doctor will. I strongly recommend you look for an excellent one in the UK.
If your mood swings work better on antidepressants (which setraline is), then I would say the chances of you having bowel endometriosis are extremely high given that a very upset gut/constipation/endometriosis on the bowel can lead to depression.
I don't want to alarm anyone (and I got flagged several times on this forum for that, so bear in mind I do not want to do that at all), but undergoing a diagnostic laparoscopy without an endo specialist is completely pointless. How are they going to diagnose you if they are not specialised in the disease? Please make sure you know the name of the surgeon who will perform surgery on you and research him. If he's not experienced and highly skilled, I strongly recommend turning to a BSGE centre where an endo specialist will perform surgery on you. I cannot suggest any names for privacy reasons but you can research them and ask for reviews online until you find one that suits you better.
Plus clearly you have endometriosis on the bowel and therefore possibly deep-infiltrating, stage 4 endometriosis, which means you will need to undergo surgery with a truly skilled EXCISION surgeon and a team of specialists anyway. Are you ok with undergoing two surgeries in the next year or so?
Endometriosis is a disease where patients are oftentime required to assess the knowledge and skills of the surgeons because they are not all trained and experienced the same, not all surgeries are carried out the same, not all specialists are present. We tend to be fobbed off a bit too much, but I know you've done your research and will know what to ask them and what not.
Thank you. I am referred to a Provisional BSGE centre, but 1st appointment was with regsitrar not surgeon. I can choose a surgeon, but I can find zero feedback on my local BSGE clinic/surgeon here in Taunton.
One thing I asked the registrar (for US readers a registrar in the UK is a doctor training in a specialism), is 'What developments have there been in treating/understanding Endo in the past 20 years'. Her reply: basically none...it is underfunded, underesearched and we know little more now than we did then. I nearly cried when she said that and I swear I think she may have nearly done so herself.
Anyhow I have made an appointment with my GP to run through some questions (to forward to consultant). I think my follow up at the BSGE is in February, but I can phone the hospital anytme to get put on the Lap treadmill....priority now is finding out who does the diagnostics and if I can choose.
Thanks again - these threads help put things in persepctive. I don't take what you said as alarmist. You have laid out something that should be strongly considered, even if there are no certainties at this point. That is plain common sense. Hope for the best, plan for the worst as the saying goes.
Just to keep the info on this thread tidy I want to add...Sertraline is indeed an antidepressant, but its pharmacological on hormone pathways is unique. distinct from the biochemical action that has led to its use for clinical depression. For PMDD type issues it can be taken in the luteal phase only (assuming symptoms only kick in in that phase of the cycle). In the UK its use in this way is 'off-label'. I asked my GP about it, and she consulted a pharmacologist (who got quite excited about the mechanisms of it all!).
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