Hi, so I had my hysterectomy on Monday. It went well though when they opened me up they found things were worse than expected. The cyst had grown from 6cm in December to 12cm. The surgeon showed me photos afterwards, I couldn't believe how big it was. I don't understand how I could have had something that large in my stomach without it being obvious from the outside, but still. The endo was all round both ovaries, attached to my bowel and, it turns out, attached to the tubes from my kidneys. Surgeon said if it had gone on much longer it would have started to block the tubes. I'm obviously so relieved that I was able to go private and get this done, as it would have been at least 18 months before I would have been treated by the NHS. But on the other hand I am so angry that the medical profession doesn't take this condition seriously. Like most of you, my gp dismissed my concerns about heavy bleeding and the cyst, it was just what happens to women. I'm very fortunate that one of the gps at my practice actually thought it might be worth investigating why I was bleeding so heavily. I intend to write her a letter to thank her.
Anyway, the recovery has actually been harder than the cesareans, which surprised me as the it's only 3 little holes. But then again, inside I'm a mess.
The worst thing has been the shoulder pain. This is not caused by trapped gas it turns out. Rather when they pump co2 into your abdomen during the operation it overstretches your diaphragm, and this triggers pain receptors in your shoulders. Liquid morphine helps loads so make sure they give you some to take home.
I've got compression stockings to wear for 4 weeks and blood thinners to inject for 7 days. I also have senna and laxulose to take for 2 weeks to avoid risk of constipation. I'll start hrt next Monday. I'm on day 3 after surgery and improving rapidly though still hobbling around like a 90yr women. Do not underestimate how much this will take out of you.
My surgeon said this was definitely the right decision and I agree, I'm glad I did it. But I'm terrified it will grow back.
If anyone has any questions about the procedure please feel free to ask, I'm happy to answer what I can.
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Jenn2022
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Hi Jenn. It’s early days but I’m sure you’ll feel much better soon. We only see 3 little wounds on the outside but you’ve had a lot done inside so be kind to yourself and take it easy. It is dreadful that women are dismissed for years and expected to put up with the pain and other symptoms of this condition. Most are misdiagnosed too, which doesn’t help. They are failing women and it’s got to change. Anyway, you mentioned your concern about it coming back. It sounds like you’ve got a good consultant so hopefully he’s educated in menopause and HRT. Starting HRT very soon is essential to avoid a huge crash in hormones and the horrific symptoms. Just make sure you are prescribed progesterone as well as the oestrogen HRT. Usually when we don’t have a uterus only oestrogen is prescribed as it is thought that progesterone is only needed to keep the lining of the uterus thin and healthy. However, progesterone is recommended for women who had a hysterectomy and have a history of endo, as it helps to suppress any remaining lesions. The best progesterone is a body identical one called Utrogestan, which is a daily capsule. Avoid the synthetic forms. Apologies if you’ve already been informed of this.
Thank you for taking the time to reply. I've been given livial but the surgeon advised waiting for a week as it can increase the risk of thrombosis. So far I've not noticed any big hormone issues - possibly night sweats but I was getting those already. I'm sure it will come though.
Hi Jenn, I wonder why he’s prescribed livial as it’s a synthetic progestogen and carries some risks. Did he give an explanation as to why he’s not prescribing actual hormones instead? The problem is that g.p’s and gynae’s don’t do mandatory training in menopause or HRT, so most are not up-to-date and are completely winging it. I didn’t know this when I had my op. They’re not even aware of the different types of HRT and just prescribe what they’ve always prescribed. You don’t have to go with what your gynae prescribes and should learn as much as you can and tell your g.p what HRT you want. Please look at Dr Louise Newson’s website called Balance Menopause. It’s got great evidence based podcasts and articles and is an eye opener. There’s no risk of thrombosis with oestrogen patches or gel so you could start them straight away. I didn’t have bad symptoms for a while and then my hormones fell off a cliff- it was torture and I didn’t think I would get through it. You’ll need to be on HRT for the rest of your life so being on a body identical and safe type is the best option. Plus you can increase the dose of oestrogen if needed. Women who’ve had their ovaries removed often need higher doses. Best wishes
Hi, both the consultant who did the surgery and the head of the endo team at the NHS hospital advised using tibolone and from the studies I've read it looks like the best one to start with. Unfortunately there's no easy answer to hrt after endo and a lot of risks have to be balanced. I'll see how I go with the livial and ask for an alternative of its not working for me
I’m sure it’ll help with the menopause symptoms, it’s just the long-term effects of synthetic hormones to consider. If you do end up switching in the future make sure you get prescribed separate oestrogen and progesterone as they’re body identical. Best wishes with it all x
HelloI am on the list for a hysterectomy. Heavy bleeding and labour pain as I have adeno and endo.
Did they say how long your recovery will take? Did you have to take decepeptyl for 3 months prior to surgery? I have been told I will have to get this awful injection again as it minimises the risk of open surgery 🤷♀️Do you feel emotionally drained and upset after having your surgery?
These are questions if you ask a gynaecologist they don’t know since they haven’t been through it.
To date I have had 1 laparoscopy and 2 ablations x
Hi,. The surgeon is giving me 6 weeks off work but said he'll extend it if necessary. But recovery times will vary so much from one person to another. It will depend very much on your level of fitness before the surgery. The healthier you are before you go in, the faster you'll recover. Also, what you do afterwards will make a big difference, get lots of rest, eat healthy food, do appropriate exercise. Everything depends on you
I didn't have to take any injections as I went private and could go straight for surgery. If I had gone through my local NHS hospital I was told I should have monthly injections to induce a chemical menopause which they said should help with the pain. Though as the pain was due to the cyst, and the injections wouldn't reduce the cyst, I didn't think they would have helped at all.
I don't feel emotionally drained or upset at all. It was definitely scary going in for major surgery but I am just very very relieved that it's been done and the cyst is out and hopefully all the rest of the endo is out too. I'm already managing on less pain medication than I was before the operation (I'm only taking paracetamol and ibuprofen now) and maybe I'm being naive but I already feel a bit 'brighter' in myself.
I’m currently in a hospital ward, approximately 12 hours after my hysterectomy surgery (uterus, cervix and Fallopian tubes) and endometriosis excised. I’m not due to see my surgeon until tomorrow and will hopefully find out a few more details then.
I’m 38 and was diagnosed with endometriosis (through laparoscopic surgery) when I was 21 and adenomyosis (through MRI) when I was 35. I have had all the usual complaints of endo, painful periods, pain during and after sex, heavy bleeding (five days prior equivalent of a lighter period followed by seven days of heavy period proper passing large clots and flooding), severe bloating, pain at ovulation and the two weeks leading up to my periods, during and for a few days after.
I have had three laparoscopic surgeries for endometriosis prior to today. I’m hopeful this will tide me over for some time. I’m aware that a hysterectomy isn’t a cure for endo but should support my adeno. I was at the stage with my heavy bleeding that I was required to work from home a week a month due to frequent flooding, passing large clots and pain. I experienced significant fatigue and pain and have experienced ongoing anaemia due to the blood loss despite taking iron supplements (I have previously required an iron infusion for low levels this past year). I was told that my iron levels couldn’t keep up with blood loss and consistently were depleted.
12 hours post-op and I can confidently say this is the most pain I’ve had post surgery for any of my endo ops. However, all of this information is background to say I am very happy to have had my surgery.
Previously tried the mirena coil (I bled for six months), the pill (numerous varieties) and tranexamic acid tablets. My quality of life has been severely impacted, from the pain and heavy bleeding, in my work, recreation and holidays and interpersonal life (romance not always on top of list when managing pain during and after despite creative positions and shallow penetration).
I’m naturally a fairly optimistic person (despite the litany of endo grievances above 😉). I kept on keeping on to the point my partner pointed out how I had normalised daily pain, significant blood loss and dietary changes to reduce inflammation (obviously something I will still need to maintain). He had been with me throughout all my surgeries and has seen how I have progressively become more and more fatigued over the years from managing my pain and symptoms.
I also have Hashimoto’s Thyroiditis that is managed through thyroxine. Despite all this I consider myself a healthy person who eats a good diet, exercise (limited when bleeding but been super helpful for mental health) and I got to the point I was sick of constant pain and life being restricted by blood loss.
So whilst the hysterectomy and endometriosis excision has been incredibly painful recovery on day one (or day zero?), I am incredibly thankful to have had it and it was the right decision for me. Clearly early days but plan to rest up as much as I can. I feel brighter in myself too (if not physically yet, certainly hopeful and positive). I figure the pain levels are always at their worst the first couple of days and weeks.
Happy for you to DM me @Jenn2022 as we go through these first few hurdles together or to respond here. (TBF this is my first post so not sure yet how DMs work - I’m sure it’s a doddle). Likewise if AllThatGlitters has questions as an adeno/endo person too.
If anyone else has any advice regarding recovery tips, experience and or questions I would also be happy to hear them!
Hi there, I’m 6 weeks post full hysterectomy and endo excised. Id really stress to take it steady. Everyone is different and will heal at their own pace put doing too much can really set you back. There are some really helpful videos online on how to get in and out of bed and tips for sleeping with pillows that make you more comfortable. Happy to dm a link if you’d like. Lots of peppermint to reduce the shoulder pain and being able to wander around a little but in the early days will also help. Keep a good eye on your temperature and wounds in case of infection which can be common. I had a wound infection but caught it quickly so managed at home with a course of antibiotics. Keep PLENTY of paracetamol and ibuprofen in too. Feel free to DM me if you have questions/would like to chat. Best of luck with your recovery! P.s there’s light at the end of the tunnel 😀
Hello I have my surgery upcoming, would you dm me the links to the videos. I'm in the stage of trying to prep loads so I don't freak out - I have an unrational fear of hospitals and anything medical! Your advice on infection is helpful too, did you have to go to hospital for that or just your GP? My hospital for surgery is 2 hours away which makes me nervous about of I need to go back there - the local hospital is only 20 mins away though.
Wow you have been through a lot! I know what you mean about normalising pain. The idea that I might get to a point where I don't need round the clock pain medication just seem so crazy. But I just want my life back.
How are you doing today? I'm on day 4 after surgery and definitely starting to get a bit fed up of being stuck at home unable to do very much. Plus I'm desperate to be able to sleep on my side but my body is adamant that's not allowed! I did manage to have a shower yesterday which was lovely.
Good advice Username12345678 about keeping an eye on my temperature and wounds - wouldn’t have been on the top of my list as I’m more aware of my pain level but clearly essential I take note of this too! I’ve been instructed to have paracetamol as my baseline for the first two weeks as a support to the stronger medications. Last night I was leaving it too long and would have massive spikes of pain.
Got into a shower today and felt 100 times better for it mentally but really sore and tugged at my insides - so felt quite tired and in pain afterwards. Again, probably finding balance and not doing too much too soon (I imagine shaving my legs will be low down on the priority for the first week or so as bending is painful!)
Jen2022 I’m in hospital tonight for my second night but will be discharged tomorrow morning with a small cabinet of medication it seems! I’m wary of becoming blocked up from the meds but also need to manage the pain. Looking forward to discharge as constant beeping of machines and observations throughout the night (last night hourly) stops you sleeping. In the day there’s always someone (doing their job) coming in, be it nurses, orderlies, shift change overs, etc. So usually someone in at least every hour so it’s hard to nap and catch up on sleep. I think I only slept about three or four hours in total last night in fits and starts. Hopefully they’ll be less interested in me tonight as catheter out, voided my bladder multiple times, drip out etc.
Be nice to be in a bed at home to nap, sleep and watch Netflix as recover! I know what you mean about wanting to sleep on your side but body says - nope, not happening!
I definitely think what username12345678 said about everyone going at own pace and listening to body important lest it sets you back. I’m always guilty of getting on with it and need to remind myself that “getting on with it” could actually set me back if I do too much. We’ll get there though.
I hope you get a bit more rest today. They'd removed my catheter and drip before they even woke me up from surgery though I had that awful thing in my hand for 24 hours so I could have doses of antibiotics. I was very pleased to get that out.
Thanks for the post, my surgery is pencilled in for April - although until it happens I'm not convinced at this stage.
I have told work I'll be off up to 6 month's as I've read so many conflicting stories and I don't rush back to a stressful job!
It's so good to read other peoples experiences. How long were you in hospital for? My biggest fear is the hospital is two hour drive from me and the logistics of getting home! I'd rather stay in longer!
Hi, 6 months is a long time. You must have very understanding employers! :).
I went in first thing Monday, had the op about 10am. It went on longer than expected because it was all worse than expected but the surgeon was happy and said I could go home the next day if all my blood tests came back ok, which they did. To be honest when they said I could go home Tuesday I was like "what??!!" And I wasn't happy about it at all. But after a not very comfortable night on the hospital bed and sitting bored in my room all Tuesday morning I started to think I'd probably be better off at home after all. I insisted they gave me morphine to take home with the other meds which they were happy to do and my dad came and picked me up Tuesday afternoon. I'm glad I went home when I did.
2 hours in a car will be hard but you'll manage. Definitely get some advice about seat belts. I just held mine away from my stomach on the way home but it was only a short drive.
All I'd say is you'll be more swollen round your stomach than you'd expect - even after living with endo belly. So buy granny pants at least 2 sizes larger than you usually wear. And make sure you have some very loss fitting trousers (I've been living in a maxi dress since I got home) You'll probably bleed a bit so bring some pads as well. You won't be able to bend over so slippers are a good choice. I love audio books so I just listened to those in my room as you can just lie there with your eyes closed.
Hi Jen, just to make you aware of a fantastic group on Facebook called Hystersisters which is great for any gripes and groans and questions to a group of women who have been what you’re going through. Take it easy it’s a slow process. I think recovery is harder when you’ve had excision of endo for sure! X
Wow thank you for sharing this it’s certainly eye opening,
I am on waiting list for hysterectomy reading what you have been through sounds very similar to myself however lately ive been having reoccurring kidney infections and i have been concerned endo may have attached to kidneys which ive read up on alittle
Im never too sure what to write on here as im not cluued up on endo but certainly getting there
Hello Everyone I’m a wee bit late to this but have been reading your messages this morning- I hope you are all recovering really well ❤️
I’m 7 weeks post total hysterectomy for stage 4 endometriosis, fibroids and adenomyosis. After the operation the consultant said my womb measured the size of an 18-20 week pregnancy. Despite fears of colostomy bag and complications, the op although complex and difficult, went really well with no colostomy. Endometriosis had already impacted my ureters and I had stents fitted back in January- I’ve now had these removed but will need urology follow up for the next couple of years.
I can absolutely relate to normalising pain and being on round the clock painkillers. I was misdiagnosed for near enough 20 years. I work full time and also have fibromyalgia. It got to the point I couldn’t cope and was warned things were just going to get worse.
I’m was signed off for 6 weeks and got this extended by an extra 3 weeks.
Absolutely rest and recover as much as you can. I did a bit too much last week and was sitting in the hairdresser when I thought I was going to pass out.
I’m not on HRT yet but might need to soon. I’m 46, getting hot flushes and some symptoms.
Hi I am interested to know how your progress is going now?. I am 5 1/2 weeks in, similar situation to you but Cyst opposed to fibroids plus all the other stuff. Mobile but not for long periods 😩 about 20 minutes in total.
Hello, so sorry for my late reply- I hope your recovery is going well ? I hope you are gradually feeling better too?I’m 11 weeks post op today, definitely more mobile now and back to pretty much normal levels but I do get a really sore back quite quickly- I have fibromyalgia too. 😘
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