pelvic pain

[Emsie971]

hi.

I was diagnosed with Endo last year and had a total hysterectomy in November 2023, everything removed.

I’m on estrogen only hrt.

last Thursday I had a bit of red blood and since then pelvic pain.

Can Endo come back?

[Mindfullness4791]

I had a hysterectomy 5 months ago for Adenomyosis/fibroids. My pelvic pain is back since starting hrt and they are now saying I have Endometriosis. Unfortunately hysterectomies don't sure Endometriosis The specialist should have given you Progesterone with the estrogen. I hope you get some answers 🙏

[Hotchick1996 in reply to Mindfullness4791]

I had a hysterectomy 5 years a go every thing removed and I got pelvic pain all the time not on anything

[Emsie971 in reply to Mindfullness4791]

Yeah I’m starting to realise that now. He said didn’t need as all removed etc. I have an appointment Friday so start the process again.

Thank you.’x

[Emsie971 in reply to Mindfullness4791]

sorry I meant to ask, are you having further treatment? Xx

[Cocoacupid]

sorry hun depending on severity of the endo even with everything removed can still grow it can grow quickly or slowly over a time period . Xx sorry no cure for endo at moment x

[Emsie971 in reply to Cocoacupid]

Only had the op in November. I can’t believe I am back here, wondering what causes this in first place. X

[Brambledoggy in reply to Emsie971]

That’s a bloody good question. ‘Scuse the pun. Because the medical profession, again only in my experience, are very good at treating the SYMPTOMS and not the CAUSE. They don’t know the cause. I’m 53, I truly hope in a few decades, if not sooner, they will know the cause of endo. It’s baffling. I’ve read books and books. Listened to so many people, so many “experts”. Honestly like many on here it has changed the course of my life. You will be baffled I bet. I am. I was never offered a hysterectomy. Unclear why as I never wanted children. I feel for those who do and can’t. There are some answers, some solutions, but I guess like any condition, any disease, there isn’t one size fits all. And herein lies the problem. What works for one, won’t work for another. Surgery, hysterectomy, diet, hormones. The only thing I’ve ever felt helped me was a truly healthy diet, cutting out the inflammation. Cutting out sugar, booze, carbs, gluten. Eat from scratch. Eat the rainbow. Zero processed foods. I would pay good money (though I don’t actually have it!) to know why I got this condition and others did not. I’m now long past why me? ‘Cos where does that get you, but I wish I had the answers.

[Brambledoggy]

Morning. Looks like you’re going to need some specialist advice now from someone you think you can trust. Not sure why you’ve only been given oestrogen and no progesterone. That seems really daft to me, maybe others can chip in??

Are you able to read my posts on this and other ladies replies?

I was told numerous times (mostly by male surgeons) but also by woman gynaecologists that endo “should” in theory stop when you reach menopause. I was fine for ages (years) and then wham heavy bleeding and that familiar dragging pain back with a vengeance.

I’m on combined continuous hrt and trying to get the balance just right, have lowered my oestrogen and upped my progesterone (progesterone being very important to us endo sufferers) and am currently seeing if this will help the dreadful pain and bleeding that’s been now nearly 4 months. I’m shattered and cheesed off but know I will solve this if only by doing my own research yet again about best treatment for myself.

Go back and really PUSH for answers. Doesn’t sound to me like you’ve had brilliant advice there at all.

[Emsie971 in reply to Brambledoggy]

Bless you. I feel for you.

I was told because all removed I can just take estrogen and dont need to worry about progesterone. I’ve always struggled with progesterone as I have an intolerance to it so the normal stuff I can’t take.

This is so awful isn’t it. Xx

[Brambledoggy in reply to Emsie971]

I really can’t help but think (and I’m NO expert) actually whatever they profess, doesn’t seem anyone is when it comes to menopause and endo and HRT!!! that you’ve been given some really shoddy information. I would love others to chip in, especially anyone medically qualified if they are reading this. I was under the impression that progesterone is our friend and is very much need to balance the oestrogen (endo enemy??) Note my question marks.

What happened in the past when you took it? What was your intolerance?

Thanks, Nina. P.S yes it’s awful. I’ve upped my progesterone recently and although it’s only a few days in, my bleeding has dried up and NO PAIN today for first time in months. I have no idea if this will change. I feel like a guinea pig, like a lot of us on here.

[Emsie971 in reply to Brambledoggy]

The info I was given was by a private endo specialist and a menopause doctor, but she did say if he confirms all gone, which he did.

progesterone makes me anxious, very very emotional and low. I had to go private as normal doctor couldn’t do anything out of the normal recommendations. I tried the coil and had same impact.

Fingers x I hope you have found what works for you. Xx

[Brambledoggy in reply to Emsie971]

I’m not sure anyone in any situation can ever say your endo has “gone away”

☹️

[Emsie971 in reply to Brambledoggy]

No, sadly I’m just leaning this. Xx

[Lucie44 in reply to Emsie971]

I'm like you having an intolerance to progesterone with severe migraine and chest pain if I do have it. Do what works for you as you know your body and if it doesn't suit you definitely don't take it. I got convinced to try the low dose progesterone tablet with the oestrogen gel and boy do I wish I'd stuck to my guns as I had the worst migraine on record. Never again. I do hope your symptoms settle down. Definitely get in touch with your Endo nurse and ask for advice. Good luck.

[Stomacron]

There is also the possibility of adhesions to your colon and bladder that they were not able to detach at the time of your surgery. I had pelvic pain from the time of surgery until I had a stoma installed in my 70s. Since then no pain.

[Emsie971 in reply to Stomacron]

Thanks. I was told it wasn’t on my bowl but well now I’m beginning to wonder.

How are you getting on? X

[Stomacron in reply to Emsie971]

I remember that before I had the colostomy, I used to get pain when emptying my bladder and when my colon was full, at other times the discomfort was less. These changeable symptoms made sense if adhesions were connecting all these organs together. When they operated on me to install the stoma the surgeon said all my pelvic organs were stuck together. I’m managing the stoma quite well, and on the whole doing ok for my age.

[BloomingMarvellous]

Can you explain the rationale given to you for being on Oestrogen only HRT ?

[Emsie971 in reply to BloomingMarvellous]

The consultant said he had removed it all and as womb, overies etc taken out i can take estrogen only…..it’s been less than a year and whilst i have this to be confirmed I know the pain in my pelvis and am sure it’s that.

So fkd off. Xx

[Brambledoggy in reply to Emsie971]

If I had to guess, and it’s only a guess, I would say that because you’re not on Utrogestan that being on Oestrogen only has caused your issues. It does make sense. I started just spotting, more heavy, more pain, more bleeding. I believe my oestrogen was too high. I flipping well know EXACTLY what my endo pain feels like, don’t need anyone to tell me. My endo was in POD, ovaries, utrosacral ligaments, bowel, bladder, like someone had blown a dandelion flower and it had scattered everywhere. The surgeon gave me an examination, said he couldn’t “feel” anything in there and lo and behold when he opened me it was EVERYWHERE. Tiny bits everywhere. No one got rid of it. I know it’s there. It’s just about managing it for me now.

NO SURGEON IS OPENING ME UP AGAIN WHATEVER THEIR GOOD INTENTIONS.

If you were nearer me we could have a right old moan to each other. Like I said, guinea pigs.

[Lucie44 in reply to Brambledoggy]

This is how I feel. They've finally listed me for hysterectomy in October and I'm not sure if there's any point. My last surgery found a very similar picture to yours and I just feel to have further surgery may cause more adhesions and potentially more issues. I'm so scared.

[BattyForBats]

Hey, I had a full hysterectomy in January, and am having pelvic pain again. When I had my lap last year I was told that there was some endo in my pouch of Douglas and it was left as there was no specialist to remove it. I'm assuming that it is still there after my hysterectomy. I am not taking any HRT

Laat week I went to the doctors to find out what was going on. He askes me if the pain was coming at the same time as my period. Thrn he asked me what I thought it was.

Eventually after a feel on my tummy and pelvis he told me that my scars have healed well. When I told him about the pouch of Douglas he said that no one could be sure that all the endo was removed and gave me some pain killers.

To say I wasn't impresses and it was a waste of time going to the doxtor is an understatement.

Pain killers aren't working and my hubbie says to go back to the doctors, but I don't have any confidence in the doctor after the last appointment.

[Emsie971 in reply to BattyForBats]

Pain killers don’t work do they.

I know it’s hard to keep fighting but do go back. I was told it was on pouch of Douglas and I am now wondering if that’s the problem…I don’t really know.

Xx

[Brambledoggy in reply to Emsie971]

Pouch of Douglas very common area for endo to be found in. I’d like to flipping meet this Douglas guy, he’s a proper pain in the you know what……🤨🤨🤨

[Brambledoggy in reply to Brambledoggy]

And why does Douglas need a pouch anyway?! 🧐

[Pilipau]

Hi. If you are taking estrogen you need a progestin to keep endo flares away, (drospirenone or dienogest only pill). Biodentical progesterone is not strong enough to keep it away, unless you take a very high dose. Endo can be in any part of the body, and it creates its own estrogen. Hysterectomy and oophorectomy don't cure endo, only excision surgery sometimes stops it from coming back, if they found every single cell in all organs. There is no cure, it acts as a benign cancer. Another option for HRT in women with endo is tibolone, as it doesn't stimulate endometrial cells.

[Brambledoggy in reply to Pilipau]

That’s very interesting to me, are you able to expend on your answer please as I am very interested in all this. I am pretty sure Tibolone is banned in the US and supposedly carries a high risk of stroke in post menopausal women???

Again, all this guesswork is VERY confusing. Some confirmation of facts would be good! I think we all feel the same. Confused.com

Thanks, Nina.

[Emsie971 in reply to Pilipau]

Thanks. I couldn’t get on with biodentical progesterone when I was on it, sent me loopy.

When I was on progesterone it was Desogestrel 75microgram tablets, two each day. I was better on them but still affected my mood.

If it is back I will have to think about coming off hrt altogether as I struggled so much with progesterone, and estrogen doesn’t do me a y favours either. Xx

[Brambledoggy in reply to Emsie971]

I’ve been considering coming off HRT altogether and will if absolutely necessary. Going to give it 3 months on current dose as I do know there isn’t an immediate effect. Having said that, there was an IMMEDIATE effect going on HRT almost overnight with horrendous night and day sweats that ruined my day and nights, and they vanished along with a load more dreadful menopause symptoms….so why the hell I’ve now been bleeding for nearly 4 months!!!! is beyond me.

I AM SICK OF WASHING KNICKERS……☹️

[Emsie971 in reply to Brambledoggy]

Estrogen helped my mood, progesterone took it back down….its only been since hysterectomy that, until now, I’ve felt good. Even started to shift weight I’ve put on. Brains cells started working again and anxiety and depression improved…

Until now…now I’m low and emotional and fckd off.

It’s beyond me all this, and I’m sure you will understand it’s such a fight to get heard and treatment, really not acceptable.

How are you feeling mentally having to deal with the bleeding, must get to you? Xx

[Brambledoggy in reply to Emsie971]

Really rubbish. I’m single with a dog. But happy in my own weird way. So in that way I’m lucky. Not sure which is worse. Endo or menopause. Endo nearly killed me as I had an ectopic pregnancy and my next of kin were called. That was along time ago when I lived in London, worked in fashion and had no clue what was brewing in my body. I am fortunately a VERY strong person mentally as I’ve been in an abusive relationship for over 12 years and am just out. Physically, mentally, verbally. Textbook. He didn’t understand my endo and I shouldn’t have expected him to. Having sex was agony for days after. I used to crawl round my garden on my knees having passed out, bleeding everywhere and he would say “typical” Nice hey?

So for me now, I can survive anything. My body failed me long ago, but my mind will never. Just me in survival mode and stronger than ever. I would hug you if I could. We all deserve that!

[Emsie971 in reply to Brambledoggy]

Oooo bless you, big hug to you.

Sometimes being on your own makes it easier to deal with things. Animals never let you down. I was single for 7 years after nutter ex boyfriend.

I was a strong person but menopause and this has kinda knocked me down a bit.

Hope your doggy giving you big cuddles. X

[Brambledoggy in reply to Emsie971]

Menopause is brutal for some. Changes to your mind and body that can really knock you for six. Wish I had been more educated and more prepared. HRT enabled me to see the wood from the trees though it’s not the magic potion for me just yet, or possibly ever. I am prepared to go down different avenues to feel my best. Diet, exercise, being kind to myself and to others. My private gynaecologist said the harder the puberty/periods when you’re younger, the harder your menopause will be when you’re older. Good luck getting some answers. And yes, Labrador is a life saver. ☺️

[BloomingMarvellous in reply to Emsie971]

Plenty of us struggle on Uttagestan but tolerate Cylcogest which you use as pessaries and then the liver doesn’t struggle as much. It’s technically “off prescription “ but a GP can prescribe if there’s reason to do so for reasons other than pregnancy and induced labour. Was the answer for me.

[Emsie971 in reply to BloomingMarvellous]

Thanks will look at that.

Wonder if a link of ladies not responding to progesterone well and Endo. Xx

[Brambledoggy in reply to Emsie971]

Cyclogest: What you need to know

Cyclogest pessaries are small progesterone capsules that are inserted into your vagina.

Like Utrogestan, Cyclogest is progesterone, which is identical in structure to the progesterone produced in our bodies, which is why it’s known as a body identical hormone.

What is Cyclogest used for?

Cyclogest is a very safe drug, which is commonly used in pregnancy for recurrent miscarriage and early pregnancy bleeding. Although it’s licensed for use during IVF treatment, the pessaries can also be used as an ‘off-label’ alternative to Utrogestan capsules.

Since the 1980s, high doses of Cyclogest have been used to treat premenstrual syndrome (PMS) and postnatal depression (PND), although it is no longer offered as a first-line treatment. However, some people do benefit from this treatment as it can ease symptoms such as irritability, depression, headache, breast tenderness and bloating.

RELATED: Progesterone intolerance

How does Cyclogest work?

If you still have your womb, it’s important to take a progesterone or progestogen as part of your HRT. This is because taking oestrogen can cause the cells in the lining of the womb (the endometrium) to thicken, and there’s a small risk of them turning cancerous. There’s no increased risk of this happening when you also take a progesterone or progestogen, as it helps to keep the lining of the womb thin and healthy.

When used to treat PMS or PND, Cyclogest works by increasing levels of progesterone in the body. The natural drop in progesterone during the second half of the menstrual cycle is the underlying cause for PMS symptoms, so using Cyclogest can help to balance out these fluctuations. Similarly, the huge drop in progesterone levels after childbirth can be the underlying cause of PND, and Cyclogest is licensed to top-up natural levels and alleviate symptoms.

RELATED: All about progesterone: PMS, PMDD, postnatal depression and menopause

What doses does Cyclogest come in?

Cyclogest pessaries are available in 200mg and 400mg of progesterone. Your healthcare professional will decide on the correct dosage for you, as it’s possible to use more or less than one pessary.

How do I use Cyclogest?

Progesterone is usually given as a tablet or via the Mirena coil, but sometimes people may be advised by their healthcare professional to insert progesterone vaginally or rectally.

RELATED: Utrogestan supply restrictions: what you need to know

Cyclogest should be inserted into your vagina as far as it will comfortably go. It’s usually best to insert the pessary just before bed, as this reduces the likelihood of leakage.

If you’re using it for HRT, there are two main ways of taking Cyclogest:

If you’re still having periods, insert one pessary each night for two out of every four weeks, on a repeating basis. This will create a withdrawal bleed each month and is usually the equivalent to taking two capsules of Utrogestan orally.

If you haven’t had a period for over a year, and are taking continual HRT, you should cut the pessary in half lengthways, and insert half of the pessary into your vagina each night, without a break. This will usually provide an equivalent dose of 100mg daily. Your doctor may recommend using an entire pessary daily if some cases.

RELATED: HRT doses explained

What are the benefits?

Cyclogest can be a good alternative to Utrogestan, especially if you’re sensitive to progesterone when taken orally. It can also have a natural sedative effect, so it may improve your sleep.

Unlike some of the other synthetic progestogens like Provera or Utovlan, Cyclogest contains body identical progesterone. As a result, most people experience fewer side effects than they do with synthetic forms of progestogens, which are also associated with a slightly increased risk of blood clot and heart disease. There’s no increased risk when using Cyclogest. Studies have also shown that progesterone isn’t associated with an increased risk of heart disease, clot or breast cancer.

RELATED: The Mirena Coil or Intrauterine System (IUS)

Who is Cyclogest suitable for?

For most people, the benefits of HRT outweigh any risks. Cyclogest can be particularly beneficial for anyone whose sensitivity to progesterone means they experience side effects such as low mood, bloating and irritability. This is because it acts locally and bypasses the digestive system.

[BloomingMarvellous in reply to Brambledoggy]

Cyclogest isn’t a pill or tablet but a pessary. It’s a bullet shaped item of about 1 inch in length for vaginal insertion. The base is a soft waxy substance You can split them to spread out the dose to suit and they are available in a selection of strengths. I use them regularly and find them easy without the usual dramas or intolerance. I couldn’t tolerate progestins at all - they made me really unwell physically and mentally both as young woman and later. Utta’ was initially okay but quickly I found strong depression, liver and digestive system struggled and I bled a lot . Initial trials with that used vaginally were better but both sleep, headaches and mood still weren’t great and I became less tolerant as time went on . It is not suitable if you have a peanut allergy apparently either. I see someone at the Newson Menopause Clinic and they put me onto the cyclogest and also let me know there was another that could be tried if that wasn’t okay . I am lucky my GP has taken over prescribing it for me as affording it privately would have been an issue. It’s also worth noting the importance of Testosterone generally in menopause but also with Endo

[Pilipau in reply to Emsie971]

I had uterus and ovaries removed 2 years ago due to adenomyosis and endometriosis. I have tried all kinds of HRT as I am only 43 and brain and bones need estrogen. Estrogen alone activated endo in the bowel and appendix, I ended up in an emergency room.

I used tibolone for 6 months with no issues except water retention and little weight gain (it was great on mood and libido) Tibolone stimulates reactions like the 3 hormones we produced (testosterone, progesterone and estrogen) without being a hormone, it's a SERM.

The only progestin that has had no side effects for me has been drospirenone (slynda) and it causes no water retention, no mood issues and it doesn't affect cholesterol, I use together with estrogen gel now, it's trial an error as each person is different. Changes in diet also help like an anti-inflammatory diet (endo is an inflammatory disease) with an autoimmune component.

Best wishes.

This is one of the latest research papers on endo:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/179...

ncbi.nlm.nih.gov/pmc/articl...

larabriden.com/endometriosi...

[Brambledoggy]

I never heard of this so just shows this forum is useful. If you go to the balance menopause website, there’s a big page on progesterone intolerance and alternatives.

Man, being a women isn’t easy. ☺️

[Pilipau]

Also, progestins are not progesterone. That is why doctors use progestins and not progesterone for endo treatment