Hysterectomy and endometriosis

[MyStar86]

Hi, has anyone had their endometriosis removed at the same time as a full hysterectomy? I am waiting to see my new specialist on Monday to treat the deep endometriosis in the pounch of Douglas and I want to ask for a full hysterectomy at the same time with the ovaries also removed. I have horrific heavy prolonged periods making me very weak, crazy back pain and pmdd so I want the hysterectomy so I am able to only take oestrogen given my problems hormonally with progesterone. Has anyone else had both surgeries done at the same time? Please could you share your experiences? Or any advice for my app on Monday would really help thank you xx

[Smokey2020]

Hi there. I had the surgery you describe at the end of July so not long enough to say if all endo pain gone for good but so far it appears to be. I did have a difficult first four weeks of recovery and would recommend you take the first week really easy with bed rest. I didn’t and I honestly think that’s what caused my problems! They recommend you take progesterone alongside estrogen HRT afterwards to help reduce the likelihood of endo growing back. They will recommend you stay on progesterone until 50 years old.

I’m on week 5 post op and starting to feel like I can do more but still get tired. It’s a really big operation so do try and have lots of help on hand for a few weeks. It’s a massive decision to make. I had adenomyosis as well so couldn’t keep uterus and both ovaries were covered in cysts so couldn’t be saved. HRT is keeping menopause at bay though.

Good luck with your appointment. X

[MyStar86 in reply to Smokey2020]

Oh thank you so much for your reply that’s really helpful!! I am scared about Monday because I’m worried they won’t do the hysterectomy but I have wanted it since my 20s so it’s not a decision I have rushed plus the endo causes horrific pain with very heavy periods lasting weeks so I would rather go through the trauma of hysterectomy surgery than suffer a lifetime of this.

I will let you know how it goes on Monday but hoping good as my last gynaecologist wasn’t an endo specialist so he couldn’t treat the deeper part as it is overlapping the rectum but fingers crossed the new guy will treat the endo and do the hysterectomy at the same time.

Thank you again and good luck with your recovery xx

[MyStar86 in reply to Smokey2020]

Sorry One more question how did they find the adenomyosis? I just didn’t know how they diagnosed that. Thank you xx

[Smokey2020 in reply to MyStar86]

My endo and adenomyosis were diagnosed via MRI by the specialist team in glasgow. We sound like identical cases as I also had endo around rectum, also on bowel and appendix. I can’t bang on enough how big an op this is and honestly you need to be prepared to bed rest the first few days so you have a smooth recovery. The specialist should hopefully be able to do keyhole for you with a vaginal hysterectomy so at least you are not dealing with a large abdominal wound on top of everything else. By week 3-4 you do start to feel much better but still be cautious of lifting and bending as you are still very much healing inside. I’m 41 so decided on HRT to pay back the hormones I’d have normally.m until my fifties. I am on daily progesterone and everol patches so again make sure you discuss your HRT options on Monday. My menopause doctor is a good website for info and even has a couple of podcasts for endo and HRT. Might be worth a look if you are considering HRT.

[MyStar86 in reply to Smokey2020]

Thank you that’s amazing, what is the website that you mentioned I would definitely like to have a look as it’s all so new to me I feel very confused after years of gastro doctors it’s a whole new world to me. What symptoms did you get with your endo in similar places to me as my gastric issues are horrific? I am scared about the hysterectomy but I know I need to do it and hoping I can have oestrogen only but will see what happens on Monday. I am 34 but have had to move back home due to the crazy pain I’m in and my back stops me doing so much all the bleeding leaves me weak and dizzy even more so post op!! My parents will be there for me but I am scared because I can’t take pain medicine due to gastro docs giving me serotonin poisoning before so morphine is out along with all opioids, serotonin drugs and ibuprofen style meds due to gastric issues. I can’t take gapapentin or pregablin so I only have paracetamol which was hard post lap but post hysterectomy I imagine that will be a nightmare. How did you manage pain relief wise? Thank you for all your help and advice it truly means a lot. Hoping the new doc will also do an mri as I wonder about the small intestine given all my gastric issues. keep me posted on your recovery xx

[Smokey2020 in reply to MyStar86]

This is the website for menopause menopausedoctor.co.uk/

My symptoms were rectal bleeding and very sore bowel movements. My periods were actually ok with my pain mainly around ovulation until period started. I experienced extremely sore pelvic area, hip and leg pain on right side for 3 weeks of cycle even though most of my endo was on left apparently!

I was on dichlofenac sodium & paracetamol with omeprazole to protect stomach & tramadol. It worked well for me but could tell just prior to op that it was starting to become less effective. I also used beyou patches which sometimes helped and the faithful hot water bottle. I am now on nothing.

After op I was on paracetamol and another stronger drug for a couple of days whilst in hospital but honestly can’t remember what it was. My pain after op is honestly nothing compared to endo pain and most days I have none at all. The first few days it was pain from the gas rather than anything else. I survived on paracetamol so I’m sure you will too.

Happy to try and answer any questions that you have although since I’m only 5 weeks post op I don’t know if endo is gone from my life but certainly remember the operation before and after!

[Italia20 in reply to Smokey2020]

Hi I am having hysterectomy on Monday due to adenomyosis and cysts.Feeling scared but reassured by your post.Iam 55 and take HRT estrogen patches.May I ask why you are taking progesterone if you no longer have your uterus as not sure whether I should have that as well.I have endometriosis as well.Thank you so much

[Smokey2020 in reply to Italia20]

Of course. My endo specialist (BSGE center) recommended I take progesterone daily as it counteracts the estrogen which if any endo left could help it grow again. Due to the amount of endo I had my consultant couldn’t be 100% certain it was all gone. I was thankful they were honest about lack of certainty so I could make an informed decision on progesterone. There are other post on HRT on the forum which may be of interest if you’ve not seen them already - search HRT and you’ll see them. Taking progesterone doesn’t guarantee endo won’t return but I believe it reduces the risk. I’ve been told though I only need to take progesterone until I’m 50 but no idea why so definitely ask your specialist. I’m thinking the risk of progesterone at that point outweighs benefit or they reduce estrogen dosage at that point but I’ll cross that bridge in 8yrs!!

I was scared, actually terrified, too before op. Just take the first week easy and really follow the advice of no lifting. With keyhole my entry points healed in less than 10 days but don’t be fooled as inside is far from healed! Good luck for Monday. X

[Italia20 in reply to Smokey2020]

Thanks for your lovely message.Very reassuring.x

[Florrie2]

Hi. I had full hysterectomy and endo removed (plus fibroids) 7 weeks ago. I had endo in pouch of Douglas. (Typical that a part of the female anatomy is named after a man) I had a bowel surgeon working with my endometriosis specialist due to this.

Do not underestimate the recovery… as Smokey2020 says, the first 4 weeks are hard. I’ve been signed off work for 3 months and I need it. I’m used to my brain coping with lots of things at once and having a hectic job. At the moment, all I can think about is when to go for a walk, how to get comfortable and what to eat. I’ve been fortunate in having my husband to help and for once in my life I’m not pushing myself. We all heal at different rates but this is a big operation so if you go through with it, please listen to your body.

However, I do feel relieved that I have had this done. I had my worst endo symptom of the leg/lower back pain for about 3 weeks and panicked that it hadn’t gone. In hindsight, I think it is just all of my internal area having a lot of healing to do.

Good luck 🙂

[Florrie2]

Re the HRT - I am on a different discussion thread on here about this. I thought you had to take progesterone if you had had endometriosis; my surgeon says I don’t; my GP is putting me on combined HRT due to the endometriosis until she has it in writing from the surgeon that I only need oestrogen as she disagrees!This is a good question to raise at this stage.

[Smokey2020 in reply to Florrie2]

It is frustrating that there is no one opinion isn’t it! I was very much told to take progesterone daily as it stops the estrogen enabling any endo not removed from going through the cycle of building up cells with the estrogen from the everol patches. The theory is that normal progesterone is part of the menstrual cycle that causes the womb to shed the lining that was built during estrogen release so it makes sense to me that taking it daily counteracts the estrogen. I think there are some who think if you don’t have your uterus then you don’t need progesterone - my surgeon was clear though that they couldn’t 100% guarantee all endo removed so recommended progesterone as part of my HRT routine. You’re lucky that your GP seems on the ball. There is a podcast as I mention above on my menopause doctor with Chris Mann who is a highly regarded endo specialist and he covers HRT in it. Might be worth a listen so you can decide what’s best for you

[Florrie2 in reply to Smokey2020]

Those podcasts are great aren’t they?

I read an article from a couple of years ago where it said Chris Mann had carried out over 3000 operations so he is highly experienced.

I listened to that podcast a few months ago so have just listened again. I’m not totally clear because Louise Newson talks about one her clients in the middle of it. This woman had hysterectomy and endometriosis removed (I think), started on oestrogen only but had some symptom flare up so she has progesterone added. Chris Mann then says, he has no problem with women having progesterone as well and goes on to say how important it is to remove all endometriosis. He then says a bit later about women pushing through for 6 months.. I presume that is on oestrogen only and pushing through any old endometriosis symptom flare ups?

I think the big issue is that focus on endometriosis is relatively recent therefore so much is still unknown. We are fortunate that at least we are diagnosed and have had an option to try and help improve our quality of lives.

Goodness I love these forums. I work mainly with men and only have a couple of good female friends so don’t really get a chance to have these discussions.

[MyStar86 in reply to Florrie2]

Hi, thank you so much for all the information you clearly know your endometriosis!!! My gynaecologist isn’t an endo specialist and was trying to help with my severe pmdd hence oestrogen only so I will see what the specialist says on Monday. Did you have lots of gastric symptoms with your endo in similar places to mine? I have terrible diarrhoea in the mornings and then later in the day and all evening I pass loads of mucus…..sorry for the details but it takes over my life it’s horrific? Where are the podcasts that you mentioned I’ve never tried podcasts before. I will look into the hrt thread as I will clearly need help going forward as it’s so much to take in I spent years thinking my issues were gastric never put it together till all the heavy bleeding started then it all made more sense. It’s really helpful to talk to people who understand as I am new to all this wnd it’s been pretty overwhelming especially with my crazy hormones I have lost it a bit. My specialist said I should feel better post lap where he removed the endo in pelvis and ligaments but left all the bad part in the pounch of Douglas so I don’t know why I would feel better when the worst part is still left…..that really confused me. Hope it’s all clearer after Monday. I will ask about the hrt as you suggested thank you xx

[Florrie2 in reply to MyStar86]

Look up the menopausedoctor website. There’s loads of info on there - more about menopause and HRT but the podcasts cover a lot of things.

I didn’t know I had endometriosis until my MRI last year which was for fibroid symptoms.

For the past few years I’d get a pain in my left side which I thought was an IBS-type symptom. My problem with digestion has been the opposite - finding all sorts of ways to get over constipation, which made my pain in my lower back/front/leg ache horrendously. I’d have times where I just couldn’t get comfortable sitting down. My periods have always been heavy and lasted for 7 days. I discovered the fibroid when I stood up in an all male office (who was my client), looked down to see blood soaked trousers.. none of them noticed! They didn’t even know that I had left and bought some cheap work type trousers at a supermarket that were so long they dragged on the floor LOL.

I had pain during sex but thought it was all in my head. In hindsight, I think I’ve had endometriosis for years.

But now I don’t! (Hopefully!!) Just a long recovery which is requiring a lot of patience.

Be prepared for the hysterectomy swollen belly caused by gas from the operation and from inflammation. I wasn’t prepared for that. It can last a while and mine is like a small melon. For some women it goes quickly and others it lasts. I’ve been told it can swell up months afterwards. To be clear, full hysterectomy plus the endometriosis removal is a big operation. I personally have no regrets.

Sorry didn’t mean to share so much but it can be helpful to hear other people’s stories so you know you aren’t alone.

[Smokey2020 in reply to Florrie2]

Couldn’t agree more with Florrie2 - it is a major op, more than a hysterectomy, I didn’t appreciate this at all but so far it is proving worth it as endo pain is gone and fingers crossed never returns 🤞

[Gardenist]

This is a really helpful discussion as I have similar issues to you. Thank you for the podcast recommendations Florrie2 I'll be taking a listen. I've done my operations in stages and each one has given me around 5 pain free years. First was removal of as much endometriosis as possible. Second was removal of uterus and I'm just waiting now to have cervix, ovaries and more endometriosis out. I'm nervous about HRT as any artificial hormones have made me feel terrible. I think from research though they are much lower doses and continual so no more fluctuations?It took me 9 months to completly recover from my subtotal hysterectomy. I think that was my rock bottom as I had years of fatigue and the op knocked me sideways. Hopefully a better time this time! Good luck with your appointment.

[MyStar86]

Oh my god that’s a very scary reply!!! I’m lost at what to do but hoping the specialist will help on Monday. I have been taking elleste solo so only oestrogen and it’s making me physically much worse but with my pmdd I can’t tolerate progesterone so all the pills I’ve tried send me crazy the pain is horrific I’m just scared and confused. Hormones are my worst nightmare I thought a hysto was pretty safe these days and normal pills don’t settle my hormones I’ve tried no pill which doesn’t help either so I’m a mess wnd now way more scared after that reply!!!!!!

[Florrie2 in reply to MyStar86]

All of my replies are based on my experience and my research. We will have different views and experiences.

The thing is that everyone is different and as with any operation there are risks. Some will have complications, but a larger percentage will not. The webbing is for complications and is not standard procedure nowadays.

Yes, having this when older is preferable due to the need to be on HRT until the average age of menopause (51 yrs) to ensure your body is protected against things like osteoporosis and heart disease. HRT does have some risks but so does not having it. You need to ask the questions and read what you can to make the right decision for you.

My understanding is that you do need the endometriosis removed alongside the hysterectomy for the best results. At the moment you are using hormones to help with PMDD? I suppose the big question to the surgeon is by having a hysterectomy, will that removal of hormonal production help or not? Perhaps? Perhaps by adding hormones into your body via HRT (I believe oestrogen and progesterone both come from yams - question for the surgeon?).

I am a low risk taker. It took me 2.5 years to finally decide to have my surgery after trying various other paths then doing lots of reading to come to my own decision.

Make the most of your appointment on Monday. Ask the practical questions but also all of your fears. You can also ask if they would recommend anyone else or any other sources to help with your decisions.

[JOSANDY40 in reply to MyStar86]

Hi there, U feel you as was a it in the dark about Hystos!!!The thing is with illness and operations. The system is to fix your symptoms. That's usually a short term thing. Drugs and pain killer help but the cause isn't their remit.

You have a lot of questions on the Internet to check up on. I remember you saying this surgeon does Hystos but are they a specialist in Endo?

Have you taken any drugs like Zoladex to improve your symptoms. You say you can't get on with some pain killers for your operation. So what is your expection of recovery? 3 mths or 6 mths +?

[JOSANDY40 in reply to MyStar86]

I feel you require more knowledge, second apinion if you are young with the risks ahead. I advise!!! You only do this once.

[loobyloub]

Hi , I am 6 weeks post op from total laparoscopic hysterectomy plus BSO (removal of ovaries, tubes and cervix) plus excision of endometriosis. I also had severe adenomyosis too.

I have been given Oestrogel HRT but no progesterone.

My post op appointment is next week so I’ll ask about that.

I was on Prostap for 12 months prior to my op which reduced my endo pain and bleeding massively. Towards the end though it was having no affect, and for three weeks before my op I was bleeding continuously and losing fist size clots. So the op was a welcome relief.

Post op pain is worse for the first couple of weeks, you have to remember you will have up to 200 internal stitches and you have had organs removed. It is a big operation.

Resting is imperative, NO lifting or carrying, no cleaning, vacuuming, cooking, shopping etc.

Stay hydrated and eat little and often. Get as much sleep as possible.

I had a bladder infection after a week so gp have me antibiotics and it cleared up.

Even though external incisions heal quickly, the internal healing is ongoing for weeks/months. No bending, kneeling, stretching.

Try and get up and walk every day. After a week or so go and walk up the street and back, taking it a little further each week. This helps with muscle strength and supports your pelvic floor.

Your remaining organs won’t fall out! But you could get a prolapse if you don’t take the advice above and rest properly.

I only had paracetamol when I came home and was fine.

Leaving your ovaries in makes the return of endometriosis more likely. If you think you can cope with menopause now, then take everything out.

If you haven’t already tried Prostap, ask your consultant if it’s an option before you resort to survey. It reduces the endo to more manageable levels and also makes it easier for them to operate on you later. X

[JOSANDY40 in reply to loobyloub]

My life saving operation at 26yrs took 12mths to recover from. Though I could drive after 4mths I couldn't drive long or far as I would get a temperature. Endo returned, as it has 5 operations since! I have gone through menopause and still have pain and 2 wks in the mth pretty unwell.So when does this Endo stop?

NO MORE Zoladax, just painkillers.

They don't understand this illness yet they are positive they know, yet they don't cos the science itself isn't up to date. To me there are 2 Endos, one for women who have it just in their ovaries and womb and other like myself where its travelled into the trunk of the body where removing things isn't the answer! Then now Endo is found in Male Prostate!!! So perhaps finally as men suffer there will be a cure to this terrible, painfully and debilitating disease.

[i8AllTheChocolate]

I was diagnosed at 30 and had laser treatment to give window to conceive. Then had large ovarian cyst removed which returned within months, so had ovary removed. Had further laser treatment few years later and several cycles of ivf due to recurrent miscarriage. At 42 I had total hysterectomy including cervix and removal of as much endometriosis as possible, it was in pouch of Douglas, bowels and abdominal organs stuck (frozen pelvis). I was put on low dose hrt. I was pain free and healthy for a good 10 years. I am now 53 and have just had results if mri after 2 years of unexplained bloating, had ct scans not showing anything gastric. The mri shows severe deep endometriosis and 2 large cysts. My left kidney has no function due to endometriosis and my right ureter is blocked due to endometriosis, I have a temporary stent until an op to repair. I am waiting for result of tumour marker to see if cysts need to be removed.

I had not realised that the hrt I was prescribed post hysterectomy was low dose synthetic oestrogen, progesterone, tiny bit testosterone, to minimise the risk of any future recurrence due to possible tiny fragments of ovarian tissue left. A couple of years post hysterectomy I went to a private hormone clinic and was prescribed high levels of oestrogen, despite giving my history)

I have had 5 laparotomy ops (2 large ovarian cyst removal, 2 cesarians and hysterectomy). Hysterectomy (alone or with endo removal) is a huge op and long recovery. My consultant said endometriosis after hysterectomy is very rare, he has not seen a case before.

My advice post hysterectomy would be to get the right type, low dose combination hrt to minimise any future issues. After the mri result 4 weeks ago I had to stop hrt cold turkey. I am now taking high dose 1000mg evening primrose oil and actually feel so much better than when on hrt and so far no bad reaction to coming off hrt.

I hope my story will help everyone with their their journey. I did feel amazing after recovering from my hysterectomy, so would recommend, I wish I had stayed on the right hrt, or switched to evening primrose sooner.

[Gardenist in reply to i8AllTheChocolate]

Thank you for sharing your experience. I've been investigating HRT options before my op next month, when I will also be 42 and this was really helpful. Hope the results of your tests and op go well .

[Aart01]

Hello , I wish you all the best and pray for your successful operation. We are strong and we will overcome this endometriosis which loads people don't even understand what it really is.Had endometriosis since very young and could not be diagnosed. Luckily after a laparoscopy I managed to conceive and I have my son. But still continued to suffer and was diagnosed stage 4. Doctor recommended a total hysterectomy( with both ovaries removed) at the age of 41. Luckily the pain was gone. I was not prescribed any hrt treatment.

Life after operation has been the same since then. You notice the lack of energy and menopause symptoms which you have to bear either you want it or not. To top it I started suffering from neuropathy 3 months post operation. I am non diabetic and am on lyrical since last 1 year. The pain and burning sensation in my leg makes it difficult to accept the fact that you escaped endometriosis and now neuropathy. My neurologist says the neuropathy is part of the hysterectomy which has resulted to a confusion in the brain and sending wrong signals. It's so hard to believe.

Still am very confident to get well and have a peaceful life.

Wish you all best and stay strong.

Aarti

[Lynne_support Partner Endometriosis UK]

Hi Walka86.

I hope that you have found the experiences shared by other members helpful. You may be interested in reading the information we have on our website about having a hysterectomy endometriosis-uk.org/sites/....

I hope that your consultation helps you make some decisions about the treatment that is right for you,

Best wishes

Lynne

[Katielaa]

Hey, I had a full hysterectomy, both ovaries and bowel surgery in May. I had a ridiculously good recovery and have never felt better. Now HRT is settled and working I feel amazing. I’m on low dose oestrogen, progesterone and testosterone.

I had stage 4 rectovaginal endo, adenomyosis, fibroids and PCOS and have no associated pain at all. I had awful bowel and bladder problems and these too have improved so much.

Agree with smokey2020, resting is vital after such a big surgery but also preparing for it too. Get as fit and healthy as your body will let you.

Best of luck xx

[SarahK73]

I had a full hysterectomy in 2019.

I had bowel surgery for the same condition in 2006.

Since surgery I have been pain free but have some bowel issues and have to have regular Colonoscopy and liquid diet but this is due to the bowel surgery which removed a significant section of my sigmoid colon.

[MyStar86 in reply to SarahK73]

Thank you but I posted this 3 years ago and had my total hysterectomy in April 22 and bowel surgery prior to this. Thank you for sharing xx