Long story short. I have been having a horrendous time the past 6 weeks or so. In and out of A&E with suspected appendicitis. Took 3 attempts to get properly tested and had a CT Scan with contrast. It revealed no appendicitis and I was promptly discharged.
The pain is looking likely caused by Adenomyosis and possibly endometriosis which I am seeing a private consultant for very soon. So, I managed to get hold of my CT scan report today to bring with me to the appointment. It revealed a lot more than the surgical doctor told me. I have multiple cysts on my liver and 9mm cysts on my spleen and 9mm nodule on my left adrenal gland. Which corresponds with reoccurring pain on left side abdomen and left side of my back.
I understand these are incidental findings and generally cysts under 1.5cm are not investigated but I wonder if these cysts are related to my hypothyroidism/Hashimoto’s especially the one on my adrenal gland? Alongside these findings I have had raised platelets, white blood cell count, neutrophils and monocytes. But no one seems that bothered about these findings?
I’ve been feeling so unwell with fatigue and the ongoing chronic pelvic pain from the Adenomyosis I wonder should I be worried about these and ask for the cysts to be investigated further? 🤔
I am so fed up with being sick all the time. I feel like my endocrine system is completely buggered. 😢
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MsWhistledown
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I was just looking through your last posts and saw you had results 6 months ago that suggested you might benefit from an increase, have you changed your dose since? Do you have up to date readings?
Adenomyosis could lead to low ferritin/anaemia have you had those levels tested, can also link to headaches.
Have they referred you to gynaecologist for discussion as to treatment? Keep pushing, keep a symptom diary.
Hopefully another member will respond regarding cysts. 🌱
Thanks Regenallotment. I switched to T3 only with new private Doc and currently on 30mcgs a day. Slowly increasing dose. Expect another increase after next appointment in November.
I am going to insist on full iron panel with my GP now like you said Adeno can cause low iron and I have low ferritin. I have seen a gynaecologist at local hospital. Quite frankly it was an awful appointment of being pushed to go on progesterone only pill (I haven’t yet and don’t want to) and to go away. Hence I have made an appointment with a private gynaecologist and will be seeing them next week. I am hoping they can help refer me back into the NHS to a good Endo clinic with a Multi disciplinary team.
A colleague with Adenomyosis tried he progesterone only pill and was suicidal within 2 weeks, also offered Mirena coil, Danish whole population studies link it to depression. She battled on reporting symptoms and has now had hysterectomy but continues to have pain at site of surgery months on. Nerve damage due to 2x caesarean scars on same site. Glad to hear you have another avenue, consider asking for a second opinion via NHS, neighbouring hospital maybe.
My goodness that is awful. Your poor colleague! I felt pushed into a corner and just said I would try it. Even though I had told her that I have tried the a few different contraceptive pills in the past and they always caused migraines. Also she pushed the coil which I have tried and that lasted a week. The pain it caused was horrendous. So really for me neither of those are an option. She really put me off any surgical intervention especially a hysterectomy. Which I know ultimately what most women with the condition end up having. And the majority say it’s the best thing they did.
Yes I've experienced the same, I have fibroids, by refusing the mirena coil my local gynae department have pushed back on me as 'it can't be that bad then' which I object to. I've had two coils removed in the past, they just don't suit me and my wonky uterus! I am awaiting another scan and will go down the 'second opinon' route this time. I am at a stage where surgery would be inconvenient but preferable. Good luck with your next steps, I will be interested to hear how you get on 🌱
I'm lucky enough not to have had serious gynae problems but I tried the Mirena coil when it was still pretty new, worse thing I did, the fitting was horrendous, they had to get a doctor in as the nurse couldnt fit it. Apparently I had a small uterus.
Pretty impressive really as my children were over 10lbs and 9lbs respectively. Then the dratted thing caused constant spotting and acne. I havent got a good word to say about it frankly. I stuck it out for a few months before demanding it be removed. The NHS got pretty huffy as they were " expensive".
Contraceptive pills and the Merina coil contain Progestin and not Progesterone. Progestin is a synthetic version of Progesterone. There's a huge difference and many women (me included) can't tolerate synthetic hormones.
Natural Progesterone may be worth exploring. The GP could prescribe Utrogestan or Cyclogest.
If you're Estrogen dominant, it can take a while to find the right balance when taking Progesterone (natural).
Doctors and Gynaes don't seem to acknowledge the difference between synthetic and bioidentical hormones. But trust me, it's huge.
And because there's the link with big Pharma, they'll often promote the synthetic hormones over the bioidentical which can't be patented in the same way.
Hi, thanks for this. I am going to turn down trying it. I just don’t want to even take the chance of triggering migraines again now that I have been stable for some time. I will see what the private gynaecologist says. If I can avoid taking anything I’d prefer that. I just feel like pills/hormone treatment is just a sticking plaster and it’s not addressing the root problem.
I feel compassion for the suffering you have endured and the indifference of medical providers.
To answer your question about cysts reported on your CT scan, yes, sometimes it’s possible to feel a cyst. But rarely. There’s a cyst adjacent to my left kidney, of an obscure type, and I feel it occasionally, when I’m dehydrated. And CTs have shown cysts on my liver. Two primary care doctors said “Yeah, everybody develops small cysts on their organs. Nothing to worry about. “
So far, I’ve found incidental findings like these to be a fertile field for needless fretting on my part, because searching the Internet can exhume scary clinical articles that are easily taken out of context.
A friend who is a GP says “The less cutting the better. If a cyst isn’t impairing function significantly, try to ignore it. It won’t go anywhere, but trying to do something about could be catastrophic.”
I can’t comment re hypothyroidism or thyroid causing cysts… however I have adenomyosis and endometriosis and these are linked somewhat with thyroid conditions.
You can be born with these things and many don’t know have these and often aren’t a problem, but there’s a condition called polycystic liver disease which also causes cyst on spleen - I don’t know how this is treated but I’m assuming as you mentioned thy are small they won’t do anything surgical, it might be something to ask your GP or consultant if there’s anything else that you could do to help situation eg diet or if there’s a treatment, it’s worth mentioning.
Re Gynaecological
Here’s my experience …I have had chronic pelvic pain since 47 I’m 58 now and had numerous MRI and investigations and I’ve gone down many rabbit holes re my health as I have a few autoimmune disorders and if I hadn’t gone on hrt for my gynaecological side of things it wouldn’t of been picked up or know what I do now…,as being on hrt bleeding and over 50 triggered and now ticked boxes on the system to act, not that my pain and diminishing quality of life was of any importance to act, over the years …I will add I had abnormal bleeding before the hrt and mid cycle bleeding, for almost 30yrs and nothing was done but odd extra smear!
My symptoms were constantly dismissed as not getting the “normal“ symptoms to be investigated further re my thyroid or gynaecological symptoms.
I didn’t particularly get period pains just lower nagging back aches for few days and long heavy bleeds 7-10 days , I’d get pain (Mittelschmerz) then mid cycle bleed also (often linked with endometriosis)… in the run up migraine like headaches for 48hrs and was getting this up to last year at age 57 …predominantly my main issue is I would get these incapacitating bad muscular like spasms and pelvic,upper thigh and lower back pain periodically, which is beyond stupid as I was almost bed bound on occasions pain lasting weeks at a time but not all the time and has impacted my life dramatically… I haven’t driven in 4 years and at times couldn’t wash dress myself, luckily don’t work or would of lost my job by now… and many women are gaslighted by their surgery in this area … mainly in my option as too little knowledge and limited pharmaceutical options to push… so please push on for better treatment.
I predominantly have gone private for most of my treatment and GP just to get my annual reviews for my conditions done … I saw out of hours Dr on the last occasions (I have been to A&E before now) who thoroughly listened and saw all my previous problems and said I needed to see gynaecologist, my GP was still not having it really and upped my hrt first to see if any improvement and referral for another mri scan for my lower back… Re gynaecological I’ve had now had 4 ultrasounds along with pelvic MRI with iv Buscopan - Hysteroscopy with biopsies 2 polyps removed D&C and coil fitted (under general anaesthetic in 2023) I’ve been on the NHS 2 week wait cancer pathway twice in 2021 & 2023 re this area, but little done. This year I started 6months course of Decapetyl injections… and see gynaecologist again next week .
We can’t tell if pain is from adenomyosis (all ultrasounds picked this up) or endometriosis (possibly seen on MRI although he mentioned scar tissue on bowel) as not much seen in comparison to other people results, but obviously as consultant says this isn’t indicative of pain some get regardless of severity seen on scans, the injections didn’t give us clear indications (caused other health issues) and was told total hysterectomy is an option but can’t guarantee the pain will resolve as nerves retain their memory - like an amputee can still feel a lost limb …and once through menopause things usually get better or at least settle, which might be happening along with coil now been in place about a year doing it’s job.
Late menopause hasn’t helped this area for me, along with numerous autoimmune disorders confusing diagnosis … I went back on hrt in August predominantly feeling better than on injections, so I’m putting off hysterectomy for now… luckily I have options but this area really needs some serious attention for women!
You have been through a lot CoeliacMum1! Thank you for sharing your experience and advice. I totally agree this does need to be researched more and us women suffering treated with more respect and dignity.
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