Endo hyperplasia & fibroids - vaginal progesterone?

[gofibrogofibrogo]

I'm 46, with two big fibroids (10cm, 4cm) and I'm in peri and recently diagnosed with anaemia.

At a fibroid scan today they've flagged I also now have endometrial hypoplasia - I measured 1.8cm on day 8 of my cycle.

In last two years my cycle has been all over the shop (23 days, 28 days, 32 days) but still "regular", never missed one.

But it has got shorter and shorter so now it's one day grim day of very heavy flooding then a couple of days of spotting and I'm done.

I'm not overly worried - I'm pretty convinced it's because I'm low in progesterone due to peri. I was recently diagnosed with a breast fibroadenoma, plus the giant fibroids, and periods feel not quite "done" all suggest that.

But I have to wait to see the consultant so trying to work out my options. Will I automatically need a hysteroscopy at 1.8cm or could they just treat it accordingly?

I've been previously told I can't have a coil (uterus is too misshapen from the fibroids) so is my next option oral progesterone? Does anyone know if I can take it vaginally to avoid side effects? I couldn't handle the synthetic progesterone in the pill, it wrecked my mental health.

Anyone taken progesterone vaginally to reduce a thickened lining?

You can take the oral progesterone with antidepressants perhaps to try and avoid issues with your mental health. Have you been on the mini pill before or just the combined one?

So during a menstrual cycle, progesterone is released later on (luteal phase) - it basically tells the hypothalamus and pituitary glands, stop now you've done your job ( which is thinking the uterus lining), let's not go overboard and progesterone maintains the uterus lining (whereas after your period, estrogen stimulates it to grow more). Essentially the hypothalamus, or pituitary glands at that point stop producing FSH, LH - that means that less estrogen is produced. Because when LH and FSH is released it triggers a follow-up of estrogen. So more progesterone means that we can suppress estrogen secretion and hopefully stop more growth of the uterus lining (helpful for periods, as it can thin it so less bleeding and cramps). So mirena/contraception pill mimics the luteal phase. But vaginal progesterone will do the same as long as the dosage is similar, ask the GP about getting a pessary or gel perhaps.

I'd give it a try but mointor your mental health well.

I'd be going straight for a myomectomy not a hysteroscopy as with the amount of fibroids you have, removal is the best option. During the myomectomy they can look around your uterus as well and check on the thickness - I'd get them to do a biposy of the endometrial lining as well.

Go and see your GP and ask for tranexamic acid and/or northisterone as they both work yo reduce heavy bleeding massively so you need to be on them till your surgery.

Have you been referred to gyne consultant?

That's all really helpful, thanks very much @TheLivelyViper

It's just the combined pill I've been on, not mini. It made me so poorly (albeit 20 years ago) I've not touched it since.

Bit of a saga with consultants. I was referred to one hospital about 3 years ago for the fibroids (when they were smaller) and advised to watch and wait. They then lost my follow up in the system for 18 months, PALS did nothing when I chased. GP eventually referred me to another hospital who did an initial scan and a phone consult. Lining was 16mm at that point but just before my period so a bit thick but not a concern - they advised no surgery really needed for fibroids but that if I did opt for it should probably be a total hysterectomy.

In the meantime the first hospital found my records and called me back. They said fibroids now too big for less invasive options (Sonata?) and advised that I definitely needed a full hysterectomy (inc cervix, "because you might as well"). In the short term they prescribed me tranexamic acid for the bleeding, and they noted a "baggy uterus" but didn't flag the hyperplasia (this was three months ago). They also prescribed me a new tablet version of the jab you take to stop your periods and try and shrink the fibroids? Can't remember it's name but it turned out I can't take it anyway because of the breast lump and migraines.

I agree I think a myomectomy would be the sensible option - the fibroids are causing increasing pressure symptoms and pain. I'm worried they might come back afterwards, but I also don't think I need a full hysterectomy just because I'm 46 and done having kids? It's a big op plus I'm worried about prolapse risks etc.

Do you know, does transexamic acid and the northisterone make you have a massive bleed at some point - to get rid of the lining that's built up? I've been taking the transexamic acid for two months and it works well to stop the flooding but surely it makes the womb lining build up because it's not being shed?

Well if you're 45 then yes it's probably better to look at a total hysterectomy including the cervix as your fibroids have been pretty persistent and the prolapse risk can be reduced as much as possible. The risks outweigh the benefits.

Tranexamic and northisterone help to reduce and stop the heavy bleeding, the lining can be thinned with progesterone so that's why you should definitely take that. Yes the fibroids are likely too big and there's too many to do like less invasive things, meds and ionisation. So have you been booked in for surgery? Like are you on the list.

Nope not yet - the first lot said they wanted to try the Ryeqo and see if that shrinks them and review me in the NY and put me on the surgery list then. But once I got home and read the leaflet it turned out it's contraindicated with my other issues (migraines, breast lump etc) so GP advised I didn't take it. But getting a follow up appt sooner will be impossible.

The second lot said they didn't think I needed surgery at all unless I really pushed for it. But I should see the consultant before Christmas so can get on his list then hopefully.

We're in the middle of a house renovation and eldest DC with SEN is doing GCSEs this year so waiting a bit longer for the op doesn't hurt.

I was worried about risk of prolapse post-hysterectomy rather than before hand though? Do fibroids increase the risk of prolapse?

If you can contact the consultants secretary and ask about trying another medication before the next appointment to shrink them , there'll be more chance with the 4cm one. Otherwise, hopefully, you can make a plan for a myomectomy or total hysterectomy before Christmas and get on the list then.

Are you still taking tranexamic acid? As in have you got a prescription from your GP for longer? When you see your GP I'd ask for the vaginal progesterone as starting that as soon as possible is important to thin the uterus lining, definitely look into the pessary or the gel and see about starting it as soon as you can.

Sorry, I should have explained it better. I was saying the risk of a prolapse compared to leaving the fibroids and the impact of that wouldn't be a good idea. For a hysterectomy you can reduce it, so maybe ask your consultant what specific Prophylactic Techniques they can do to reduce it (this is done during surgery) and also start pelvic floor physiotherapy if you can even now or before surgery, and then continue a few weeks (once recovered) after surgery as well. Fibroids don't increase your risk. The risk comes from the hysterectomy.

Yep, I've got a stash of transexamic acid to see me through at least 6 months, I'll keep going with that. And I'll try and get a GP appt to see about vaginal progesterone and get on that asap.

And yes that's my concern re prolapse - I had a mild one after DS2 and his giant head and it made me miserable, don't want to get one properly.

My other left field idea was green tea supplements - there's some interesting research about the impact of EGCG on fibroid volume - one RCT (albeit a small cohort of 30 odd) reduced volume by up to 30% in 4 months. Obvs don't want to medicate myself but did wonder if the consultant would entertain that as a less invasive and non-hormonal option...

That's good that you have a long supply of tranexamic acid, make sure you take 1/2 every 12 hours to make sure the bleeding is very controlled.

I think the research on green tea isn't conclusive enough and it would need very high doses of it as well, I mean it won't hurt if you want to drink that but I'd highly doubt that it will reduce and shrink your two fibroids enough and I wouldn't reject other options in the appointment as you may then be discharged from secondary services or you may be put on the surgical list in that appointment.
That means you'll wait even longer because you'll have to have another appointment to get on the surgical list, when even if you get on it on Christmas, it will likely be still a longish waiting time.

You could ask your consultant about a few options being, myomectomy (removal of fibroids), or Acessa or Sonata (radiofrequency ablation of fibroids) or fibroid embolization (interventional radiology procedure to block blood flow).

On a prolapse, ask your surgeon if they will be using Prophylactic Techniques. If they say yes, which they likely will as they are the recommend ones, then ask which specific ones. Definitely start pelvic floor physiotherapy as soon as you can, you can self-refer on the NHS and I'd recommend doing so.

Thanks that's super helpful. They said they'd ruled out Sonata because they grew too big in the 18 months that they lost my recall appointment, but UAE might be an option - though they said that would help with bleeding but not bulk symptoms though.

Sounds like I'm aiming for a myomectomy or hysterectomy - will definitely ask about prophylactic techniques.

Thanks again for the advice, feel much better if I can go into these appts with all the info 🙏

A hysterectomy is the definitive treatment for endometrial hyperplasia. I would be
looking at this tbh in view of the fibroids as well.

You need a discussion with the consultant gynae asap. This should not be left untreated.

And fibroids can increase the risk of prolapse going forward. I was going to suggest going private if at all possible even if it’s just to discuss treatment options because waiting lists for gynaecology are miles long and you’ve already been waiting a long time.

Yes you're definitely aiming for either a myomectomy or total hysterectomy as they are quite big to be honest. I'd say start the vaginal progesterone as soon as you can do thin the uterus lining, as if you start now by the time of surgery, it should have thinned a lot and then depending on how severe it is, you may not need a hysterectomy for that side of things, the real reason for the hysterectomy are the fibroids.

I'd say when you see the consultant again at Christmas get on the list for total hysterectomy and then ask if you can try the fibroid embolization as well before to help with the bleeding and perhaps the acessa (not sure if you can have this with your breast issues but worth getting your GP/consultant to check). That way by the time you have surgery depending on how they've reacted, if you want to have the myomectomy instead you can. They don't normally mind changing it too much, as they'll just do the right one of the day, but you'll be on the list from Christmas. Rather than waiting to see if the embolization/acessa works, see it doesn't and then get on the list 6 months after Christmas.

You'll be fine, obviously a prolapse is a risk but they can and should use the right techniques to minimise the chances as much as they can. It may still happen but if you are watchful for the symtpoms, do pelvic floor therapy for months before the surgery (and start when you can after, wait 6+ish weeks though) that will also help. I hope you can get it all dealt with soon and then either surgery which you decide on as well.